Disability and how it affects the family

Guest Post by wordssetmefreee

Disability comes with many names – autism, Asperger’s, muscular dystrophy, bipolar, Downs – basically any condition that interferes with day-to-day functioning. People with a disability are usually reduced to a bunch of letters and labels – ADD, ADHD, MS, DS, CP, and so on. Disability can be physical, developmental, or both and can vary in degree (mild, moderate, severe). But disability evokes ONE single emotion in the minds of every family hit by it. Fear.

Fear is what you first feel when your child has been diagnosed with something. Fear of what lies ahead. You feel the ground under your feet slipping away.

The general stages that many families go through are Fear, Shock, Denial, Anger, Bargaining, Grief, and Positive Acceptance. They may not happen neatly(one at a time) and in any particular order. Just when you think you’ve gotten past the stages and progressed to Positive Acceptance, a challenging phase can trigger one of the earlier stages.

Each family must traverse it’s own individual journey. No two disabilities are alike, no two people affected are like. And no two families are alike. My younger son, 12, has autism. (I also have an older, typically developing son, who’s 16.) I do not have knowledge of disabilities other than autism and I will use that heavily in this post, in terms of examples. I will also write this from a parent- young child perspective (please translate the situation appropriately to other disabilities and other relationships such as caring for a sibling or a parent).

What I hope to share here are some thoughts, experiences, and strategies that may be helpful to all families with disabilities, regardless of the individual diagnoses or differences in the challenges they are facing.

Practical Considerations

1. Get a Comprehensive Evaluation

A thorough evaluation by a professional is not only important to understand your child’s diagnosis, it also becomes the basis for appropriate services.  Do some research and find a professional (such a psychologist, physician, developmental pediatrician, or other expert) that you feel comfortable with in terms of both knowledge and manner.

In the early days, my son’s evaluation gave me the first piece of clarity in all of the chaos – it not only captured his diagnosis accurately, it also summarized his strengths and developmental challenges, and recommended a list of therapies, tools, and services that would help address his challenges. Having something concrete in my hands was a lifesaver. I had a purpose. A sense of direction.  I needed to help him. Therefore I needed to be okay.

2. Research interventions related to the condition.

Beside’s the doctor’s or psychologist’s recommendations, do your own research on what is out there helping those in the same situation. Look for therapies, tools and technology that will help your child learn, communicate, and grow. Get trained in these interventions.

For my son, a host of therapies have been effective – Communicating Partners, Floortime, Applied behavioral Analysis, Occupational Therapy, Speech Therapy, and Relationship Development Intervention. There are literally 1000s of apps on the iPad to choose from – I use the ones suitable to his needs. I also attend workshops, read books, and get trained on how to use specific techniques to help him learn and grow.  It also helped to teach my older son some play-based strategies so he could find ways to connect with his brother.

3. Start a Journal

Make observations about your child.  Keep track of missed developmental milestones. Also make note of your child’s unique traits, preferences, dislikes, and fears.  What motivates him?  What gets him too excited?  What calms him down?  How does he communicate?  How does his responsiveness vary, based on the environment?  How does he relate to various members in the family?

One of my journal entries from many years ago reads “he likes spinning balls”. Over the years, he was taught many things using various balls (some shiny, some springy, some squishy) as rewards. Now he has graduated to playing basketball with his brother and at school. The next step is to teach him to play basketball in the community (like a neighborhood league).  It all started with a spinning ball.

4. Do some research on funding.

In the US, insurance companies cover some therapies and services, while the government covers others. While at least half the services we use are covered, the other half have been out of pocket – because what is covered can often be inadequate/minimal or have many conditions attached or may not be appropriate for the child in question. Therefore, you might also want to set aside a separate fund for educational tools, supports, and medical appointments. There may be specific government grants and scholarships, educational savings accounts and living trusts, specific to each country. Yes, a disability can be a huge financial drain and requires smart financial planning both for the short and the long term.

5. Read up on Disability Law

There is generally a body of law governing the education of people with special needs. For instance, the Individuals with Disabilities Education Act is a federal law in the US that ensures that every disabled person has a right to an appropriate education, which must be provided by the schools. However, what’s ’appropriate’ can be wishy-washy. Therefore knowledge of the law is crucial.

One day, I was in a meeting with 8 other professionals whose jobs depended on denying as much funding as possible (a psychologist, a behaviorist, a lawyer who was mediating on behalf of the funding agency, my case manager, etc.). I felt so alone. They were all disagreeing with me, denying my son services that were helping him make progress. But I had done my homework and come prepared. I quoted cases, laws, precedents that were relevant. I also had detailed reports and records, videos and proof of his progress. The data spoke the truth. I got the services he needed.

Of course, I would never let them know that there was moment in the meeting when I came close to crying. We seldom realize how strong we are – until we are forced to be.  That was the day I realized – when you understand your rights, knowledge is truly power. You can advocate for a range of services that will help you child achieve his full potential and live as independently and productively as possible.

6. Make a plan for sharing responsibilities. 

Make a list of your new responsibilities and things that need to be done. Discuss with your spouse or other family member how you will share responsibilities and juggle your respective tasks.  Your workload practically triples when your child is diagnosed with special needs.  All of a sudden, you will find yourself becoming a teacher, advocate, therapist, behaviorist, and counselor (besides being a parent).  You will be making multiple appointments, doing a lot of paperwork, and driving a lot more – to therapies, playgroups, support groups, workshops, etc.

Planning, being organized, and sharing responsibilities is the only way to fit in everything and ensure all the important areas are being addressed.

Emotional Well-being

1. Allow yourself to Grieve

I researched interventions, recorded behaviors in journals, built spreadsheets for tracking goals and flowcharts to design his programs. What I couldn’t do easily was grieve.

I felt grieving was an act of betrayal toward my son. If I sit down and cry (even in private), will he sense it on some level? Will it sadden him? Which child would want to feel responsible for making his parents sad?

My husband, like many men, was also uncomfortable with talking about our son’s autism outside of problem solving.

It was finally on our first visit back home, (2 years after diagnosis) in India, in my childhood room that it happened. We were talking about his autism and my husband broke down. I was caught by surprise. I had never seen him cry. I too cried about it, for the very first time.

I realized I wasn’t sad. I wasn’t disloyal. I wasn’t weak. I just needed to cry. It was intensely cathartic.

The crying did not change our love or commitment to him one bit. It opened the floodgates for us. We’ve had many discussions since then about things we were uncomfortable broaching. About our fears. About his future. Giving words to the unknown makes it known. And the known is easier to deal with.

2. Start Building Supports and Networks

Recognize that you are in crisis mode, at least in the first 2 years, until you’ve figured out supports and services. Look to your family and friends for supportive people who are willing to help and can take on tasks for which you simply do not have the time or energy.  Sometimes having a cup of coffee with a friend can go a long way in relieving some of the stress. Form a support group with other like-minded parents in the same situation.

3. Don’t forget your child is a child first. His condition is secondary.

Your child still needs to be loved and cared for. He needs to play and have fun. For that, he needs a relaxed parent.

It was hard for me to be relaxed in the beginning because I had so much on my plate. But playing with my son and letting him be a child magically reduced my stress levels. If he does something annoying, I try to remember he could be doing it because he’s a child and not necessarily because of his condition. I try to refrain from looking at every action of his through the autism lens.

4. Build independence and pride for your child.

I also have been working on making him as independent as possible. We don’t have a handicapped-parking permit because I taught my son to walk safely in the parking lot, so others who truly need it may avail of it. We don’t use special passes at amusement parks because we have managed to teach our son to wait in line (again so these can be used by people who genuinely need them). I want him to know he will be given help and support but he does not need crutches. My son needs to help out with chores like everyone else in the family. I will not do anything for him that he is capable of doing himself. He has developed a sense of pride in himself. He will struggle with something for the longest time and do it himself rather than take help, in many instances.

5. Figure out ways to support the needs of other members in the family.

Siblings get the hardest hit. Make sure you dedicate one on one time with your other child/children. Be involved with them, partake in their activities, and be supportive and understanding of their own struggles. If they have negative feelings toward their sibling with special needs, you need to listen, validate, and teach them practical ways to deal with everyday problems arising out of their sibling’s condition.

Siblings of children with special needs can go in two very different directions. They can take on a lot of stress and break down under it and really “act out”. Or they can learn to deal with the challenges positively – in the latter case, they tend to become mature beyond their years.

Reading, running, and chess are three activities I share with my older son. When we discuss books or play chess, we are being friends and equals. When we run, he beats me every single time! The rest of the time, I have to be a parent to him, an adult, of course. But when we do something we both enjoy, we are building an easy bond that sort of helps us tide over tensions during other times.

6. Humor can be survival.

Humor is the best medicine, yes. In the absence of a cure, it’s the only one. Don’t forget to kid around. In my family, we all poke good-natured fun at each other. It’s our most cherished tradition.

7. Don’t get exhausted. Take breaks.

I religiously go for my Sunday morning hike with my friends. I also go to my monthly book club. My husband and I go out for Friday lunch dates, every other week. My husband likes to go to Fry’s Electronics to browse or watch the local baseball matches with his buddies. We stick to these activities no matter what. Taking care of ourselves is just as important as taking care of our children. Also the latter is ineffective without the former. (Remember the flight attendant’s safety mask announcement.)

8. Be an Effective Parent

Remember that no professional can know and understand a child to the degree of intimacy that a parent can.  It is only possible for a parent to deeply know his/her child due to the constant proximity and the very nature of the parent-child relationship.  However, many parents may be so distressed by the diagnosis that they may lose sight of this important fact – a knowledgeable parent can be an indispensable and powerful member of the child’s intervention team.  You truly have the power to help your child be the best that he can be.  You will not be able to do it alone – you will need help from professionals, family, and friends – but it all begins with you.  When you are able to set aside the ‘Why Me?’ question, when you are able to overcome your grief, you will start seeing how beautiful and unique your child is – you will then be a powerful force in aiding his development and shaping his success.

DEALING WITH STIGMA

I’m lucky to live in the US. My neighbors know my son and his issues but they don’t let it bother them. They find ways to connect with him (by casually asking, “Hey Ryan, wanna help me out here with this lawn mower?”) and if he’s not there, always check in on me and ask me how I’m doing and if they could help with anything. Same thing happens at our neighborhood cafes and restaurants. They know what his usual order is.  They don’t freak out if my son does something weird. I have been reduced to tears (in the beginning) at the absolute kindness and helpfulness of random strangers. The public spaces in this country are tremendously accepting of people with disabilities.

When I visit my family in India, I do sense a lot of stigma and silence on the issue, although I also sense it is slowly getting better. Still, some mean people ask rude questions or call him rude things. Once I was on a local flight with both my sons and the family behind us kept making rude comments about my younger son.

I put up with it until I heard, “If he’s mad, he should be in an institution, not on a plane.”

I finally stood up, turned around and told them “My son has autism. I have the right to inhabit this space as much as you do. He is not being disruptive. He is intelligent with a high IQ, sensitive, and a really nice human being, but I don’t expect you to understand that, not in a million years. He has the right to travel without discrimination. Please refrain from making rude remarks. If you continue to do so, I will not hesitate to complain to the authorities.”

I highly doubted that “the authorities” cared, but singling the offensive people out put the focus back on their behavior. It was sufficient in getting them to leave us alone for the rest of the flight (during which they maintained a deathly silence). While my boys and I calmly carried on with playing magnetic Scrabble.

The key is confidence. Do NOT be apologetic. It is NEVER the child’s fault. EXPECT adults to behave courteously and if they don’t, then DEMAND courtesy. I’m a veteran now at handling ignorant remarks about my son.  In the early years, my eyes would sting with unshed tears, my throat would catch, but I would gulp it down and pretend I was fine.  But ignoring comments is losing an opportunity to take a stand.  Remember Rosa Parks. Refuse to sit in the back of the bus.

And that’s how you deal with mean people, what about good people?

Good people in India tend to avoid the subject altogether. Although this is well intentioned (they don’t want to hurt you), I feel this is not acknowledging the elephant in the room. Their being careful comes off as indifference. I start talking about my son’s autism. Once I share willingly and enthusiastically, they begin to relax and ask me more and try to understand more. It’s okay to ask. It’s better than being indifferent. The more we talk about this, the more we break the silence and the stigma around it.

The good news – autism schools and services are burgeoning in every Indian city and from what I hear, the quality is top notch, and the professionals are empathetic and dedicated.

IF SOMEONE YOU KNOW IS FACED WITH DISABILITY

If a friend or a cousin or a co-worker you are close to is battling a disability, you may wonder how you can be of help. Here are some ways to be helpful:

1. Ask how you can be of help.

When I was a student in Canada, one of my fellow students lived in the same building. He was in a wheelchair but incredibly independent. He drove a specialized car and worked a part time job to pay his way through school. We would sometimes run into each other in the parking lot when we returned home at the same time. We would be talking while walking, he wheeling next to me walking. When we reached the building’s entry door, I would always wonder if I should run ahead and get the door for him or not. What if he reaches a step ahead of me? Would it be rude if I insisted on getting the door? Does he see that as ‘forced dependence’? So, one day, I just asked him what he preferred. He told me he’d appreciate it if I got the door for him. Problem solved! I happily got the door for him every time after that. I also told him since I lived in the same building to please ask me if he needs help with anything else. He did ask for help with unloading groceries, so every Sunday, I would get them from his car to the elevator. Then elevator to his door. Such a small thing for me. But every little thing counts, when you are faced with something big.

2. Understand and read up on the challenges.

When I saw my cousin suffering emotional abuse, it bothered me quite a bit. Here was a guy who had followed me around like a little brother when we were both kids. Here was an aunt who had been kind to me in my early years in the US. What has happened to this family, I wondered. They are all good people, yet they are suffering. I found myself reading everything I could find on the subject, so I could start pointing him in the right direction.

One of my close friends (who has typical kids) began reading up on autism after she met my son for the first time. I was surprised and touched. She said she wanted to understand him better. Learning about something that doesn’t affect us, is, I think, an act of love.

3. Let them know you are there.

Don’t offer sympathy. Most families affected by disability are like any other family. They have their own challenges. They will find ways to deal with them. Challenges make people stronger, more capable, and more empathetic. Rest assured they will find ways to be happy and enjoy life. But letting them know you are there – to listen or to help – is meaningful and genuinely supportive.

4. Know that different doesn’t mean inferior.

Know that someone who may act strangely on the outside may be very intelligent on the inside. The intelligence is trapped in a body that is difficult to control. There may be great ideas inside the brain, but to be expressed, neurons must carry them from point A to point B, then to C, then to D. If the neurons misfire, the idea is trapped inside. It can only be brought out by providing supports (visual, auditory, tactile, kinesthetic, etc.) And this is now being done through the use of various technologies (devices, apps and various software programs).

If I tested you in Mandarin today, you’d fail miserably. That doesn’t mean you aren’t smart. It just means I need to find the right language to test you in –one you are fluent in. With autistic people this “right language” is technology. Give them a multi-media way of learning and expressing and you will see that many of them are incredibly gifted. The giftedness is a result of overdevelopment in certain parts of the brain that seems to be a way of coping with deficits (neural connectivity) in other areas. Those autistic individuals who’ve had everything fall in place for them (a complex combination of supports, people, technologies and figuring out the blocks) show giftedness in math, programming, music, and poetry.  Notice how all four areas require excellent pattern recognition – little surprise since many autistic minds are obsessed with patterns.

Those whose ‘puzzles’ haven’t been solved, whose systems haven’t been ‘configured’, who are constantly battling sensory overload – although just as intelligent as those described above – continue to be trapped in their prisons – unable to demonstrate how much they know and understand.  It’s a little like suffering stroke.  You see a pen.  You know it’s s pen.  You just can’t get your mouth to say the damn word.  You are immediately labelled “not smart”.

You’d think most people instinctively understand that jokes about disabled people are in poor taste. You’d be surprised. President Obama himself made a derogatory joke about the Special Olympics. In case, you’re still using words like “retard” please wake up and step into the 21st century and refrain from using words that demonstrate ignorance.

Please, no matter what you do or don’t, DO NOT feel sorry for disabled people.  They don’t need your pity, they need your respect, and if possible, your help.

You can help disabled people in the following ways:

  • allow them to live with dignity and autonomy
  • ask them how you can be of help
  • give them ways to become independent and productive
  • give them ways to talk about their condition without secrecy or shame
  • accept them as human beings with human weaknesses, strengths and dreams

Related Articles:

Building Trust Non-verbally – https://wordssetmefreee.wordpress.com/2014/05/28/building-trust-non-verbally/

The Stories We Choose To Tell –

https://wordssetmefreee.wordpress.com/2014/07/07/the-stories-we-choose-to-tell/

Holding it in Letting Go –

https://wordssetmefreee.wordpress.com/2013/05/02/holding-it-in-letting-go/

Starting on Green – https://wordssetmefreee.wordpress.com/2014/11/07/starting-on-green/

The Road Taken – https://wordssetmefreee.wordpress.com/2013/09/05/the-road-taken/

A Day in the Life of a Family with Autism –

https://wordssetmefreee.wordpress.com/2014/10/16/a-day-in-the-life-of-a-family-with-autism/

Life with These Boys – https://wordssetmefreee.wordpress.com/2013/04/02/life-with-these-boys/

The Art of Asking for Help – https://wordssetmefreee.wordpress.com/2014/01/10/the-art-of-asking-for-help/

Light It Up Blue –

https://wordssetmefreee.wordpress.com/2015/04/06/light-it-blue/

Autism and Bullying

http://www.independent.co.uk/news/world/americas/autistic-teenager-beaten-up-by-bullies-makes-them-watch-20minute-video-about-autism-10368201.html

 

53 thoughts on “Disability and how it affects the family

  1. A very good post and a guide for young families who might be challenged with a special child.

    I have volunteered at the Special olympics tryouts for the past two years and seen people of all ages and all spectrums of disabilities compete with enthusiasm. It’s an humbling experience.

    I once saw a man of about 21/22 – tall, handsome and no signs of any disability…he looked normal. I almost thought he was accompanying the athletes until I saw his badge. He was given intructions to do the long jump and all he could understand and do was just take a step forward. It’s so easy in a social setting to not even know that he had a disability and consider him rude if he didn’t behave in normal way. Posts like yours bring visibility to this issue and I hope it helps people understand disability.

    Liked by 2 people

    • The worst disabilities are where you look normal on outside while the struggle is etched on face ! There is not much empathy to grownup or even elderly who are disabled over the years ! Grown up adults who suffer any disability lose their jobs ! There is no empathy in India for the disabled,and resources for the disabled who don’t have family to help them is zero !

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  2. Having volunteered for quite a few years at an NGO for people with disabilities, there are some things that are glaring. In India, people with disabilities are either mollycoddled and rendered incapable of doing anything by themselves, or locked up in rooms and left to rot. In between the two extremes, we have young men and women and children, all fighting to just live, and be allowed to live in peace. It is heart-breaking, honestly.

    But then I also realized that the problems of the disabled in India were not unique. Apart from the aspect of their physiology not functioning correctly (and which can be overcome to a great extent with creative solutions and technology), they are facing the exact same cultural problems and environment that a “normal” (I hate to use the word normal; what’s normal really, and doesn’t everyone have a disability anyway?) person faces in India (examples: extreme parental expectations, not treating children as adults capable of making decisions, the crazy education system, the job market for which they are simply not ready). Many of the problems the disabled face in India are more a product of this environment, and less because of their own disability.

    The solutions need to be more broad-based and included as part of the environment we live in. That involves a whole systemic culture change to be more inclusive. We’re getting there very, very slowly. Till then, addressing this issue is completely person-driven, with very little help from the system (eg: the unwarranted prudery of gynaecs – http://theladiesfinger.com/yes-your-gynaecs-thoo-thoo-chee-chee-prudery-can-ruin-your-health/).

    Still, I am optimistic. I know people who are doing amazing work in this field, and it’s heartening to see that. More power to them.

    Liked by 3 people

  3. Disability in any one family member makes other family members nicer people,…..some become more understanding to other people and even the indifferent family member becomes less judgemental !
    Your son over the years probably made you more insightful and if I may say so,a better human being !

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    • Cosettez, I’m really not sure how it has impacted me as a person. Someone who knew me before and after would be able to tell I guess.

      I do not think you need to experience adversity to be a decent human being. I see lots of people everyday caring about things that don’t impact them directly. Why do scientists dive into oceans to save sea animals from increasing levels of pollution? Why do people raise funds for an earthquake all the way across the globe? I don’t think you need to suffer to be bothered by another’s suffering.

      However I cannot deny his autism hasn’t had an effect on me. It has taught me a lot about hidden strengths. Every single one of us has this inner strength and capacity for self-direction and autonomy. We just have to become aware of it.

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    • The opposite also happens. My paternal aunt has a daughter who has spasticity and cerebral palsy.

      Since they live in the US, my cousin has fortunately received a lot of care and therapy.

      However, my aunt’s older son has pretty much grown up unparented. A disabled child can often consume the care-giving parent completely, leaving little time and energy to parent “normal” child”.

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  4. Such a heart warming post.
    I love all your posts priya.
    This post went a notch ahead and opened a new horizon for me. Very educating, I am all the more eager to read up more about the topic.
    Thanks a lot for explaining so beautifully with examples from your life.

    Liked by 1 person

  5. Loved this post, Priya. I would have been one of the silent ones, avoiding talking about the child to the parent because I did not know what to say. Your post really helps. Thank you.

    Liked by 1 person

  6. very commendable what you have done, Hugs priya. With 2 kids with aspergers and 1 with no hearing in our extended family we are trained. dont blink an eye or mis a step nowadays. they are kids thats that .

    Liked by 1 person

    • I have friends like you here – they don’t blink an eye, treat him casually, not with kid gloves and I love them for that. Thank you for being one of those people.

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  7. Take a bow, Priya. I’m blown away by this post. I’ve followed many of your posts on your blog and have read every single one you’ve made here and this is by far the best of your writing. Your words are crisp, straightforward but have that tinge of empathy without evoking a pity party. When I grow up, I want to write like you🙂

    That being said, I’m hearing great things about services for kids on the spectrum being developed in India and I’m heartened. I remember distinctly a friend’s little brother being called “retarded” and kept locked up inside the house not many years ago. Sadly enough, that kid could verbalize reasonably well. Yet there was no guidance or motivation to get the child help. He was labeled and locked up. I wonder what happened to him…

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    • Thank you and hugs, Krith:) Some families I know are also heading back to India for the autism services, so things are getting better, and the awareness is coming. I hope someone reaches inside this boy.

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  8. I have had interacted with people who have special needs children. I always have hard time broaching the subject and not sure how they react or reach out to help them. All I could say was – “Please let me know if you need any help”. Speaking about is a difficult topic. I just stay out of the whole-bringing-up topic assuming that it would hurt them.
    Great insights and glad to hear your perspective and expectations. Great points indeed.
    Disability of any kind takes a toll – not only on the person, but on all the family members.
    Glad you are taking it so well and standing up for it when required. Hugs.

    Liked by 1 person

  9. This was very educational. That’s all I can say. I have always thought, not being over indulgent is the right thing to do, but I have never been sure. I hope I can behave correctly the next time I come across a person experiencing disability.

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  10. Replying to ansumani’s comment down here:
    Yes it’s harder when they “blend in” more because the expectations are higher. They can come very close to being typical but “typicalness” continues to remain an elusive asymptote!

    He understands he needs to jump. The problem is not with understanding, it is to do with motor planning – the brain’s ability to carry forth the idea through a series of unfamiliar actions. When we first learn to drive, we struggle with switching between the gas and the brake, between observing the truck 10 feet ahead and the child running across 2 feet ahead. Gradually, this process becomes “automatic” because we’ve developed a motor memory. As soon as we step into a foreign country with different road rules, we begin to fumble again, because we can’t rely on our motor memory anymore. We must start motor planning from scratch.

    For people with autism and certain other disabilities, every day is like being in a foreign country. The idea that they need to jump gets splashed around in the brain and doesn’t get distilled. It gets dissolved in with all the other stimuli coming in (the sounds of traffic on the road across, the sounds of children playing, the sunlight streaming through the trees, the instructions, someone shouting, someone humming, other’s facial expressions and emotions). We have a way of filtering out all these stimuli and focusing on the signal. They don’t. Every single stimulus comes at them with the same frequency. There is no room for developing motor memory. Hence the difficulty with the “simple” action of jumping.

    Liked by 1 person

  11. As a mom to a 21 month old, I have been reading tons of material on autism and other related issues and I worry at each and every small delay in my son. Just this week hubby and I were talking about how our son does not say as many words as he used to few months back. Maybe its just a phase (gonna talk to his pediatrician too), but I think most of us get so caught up on what is “normal” that a slight indication of something deviating from that freaks one out.
    That said, I have always admired the way you deal with parenting situations that require patience.. I know, I for one severely lack patience and one small tantrum from my son makes my BP climb high (no exaggeration!). Keeping ones’ calm when your kid needs help is one of the hardest things, I feel. I loved this post, very detailed and full of good information.

    Liked by 1 person

    • Yes we live in the age of information overload so I’m sure many parents of babies/toddlers feel trepidation at every delay. Just remember we can’t control what happens to us, but we CAN control how we respond to it. Hugs and best wishes for your son.

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  12. I guess most people feel awkward around disabled people, especially if they are just acquaintances and not friends. They might be very curious but may not know how to approach the subject, so they studiously ignore it.

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    • Thank you Megha will check this out.
      “My Sister’s Keeper” by Jodi Picoult is another one. I love the way she tells the story through different voices/point of view. It’s a great exercise in perspective taking. It is intense, mind you. I had to put the book down several times just to collect myself. But if you can handle the intensity and the pain, the book also opens you up to the dramatic breakthroughs we all experience occasionally in our mundane existence. And the moments of clarity in the often confusing, conflicting positions we take.

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  13. Priya, we recently experienced that fear in my closest family circle.😦 For several weeks nothing we did, or read or heard helped. Fortunately things have improved since then. (Hate to be cryptic but can’t really share the whole thing here.)

    I really admire your ability and patience to put your experience in writing. It’s one thing to be strong and take a challenge head on – guiding others to face their own challenges takes true character. I am so glad there are people like you. Warm hugs to you. My best to Sam, Ryan and you guys.

    Liked by 1 person

  14. I’m not sure who this blog reaches but I’m going to ask anyway …… It would be great to hear from families facing autism and other disabilities in India. How do you find the services in your area? How do you cope with day to day challenges? What fun things do you do as a family? Which interventions have helped the most? Anything else you want to share (if you are comfortable) will help others going through similar challenges, give them hope and strength, and let them know they’re not alone.

    Liked by 1 person

  15. I just loved this post. It is well-written, simple, inspirational and above all very positive. Take a bow, Priya, for writing such a wonderful post. I am sure your sons will excel in all activities that they take up, given such positive parents at the helm.

    I have seen how autistic kids are treated in India. My aunt has gone through this. The stigma attached to such kids, the sympathetic looks, being called ‘mad’ and blaming parents of past sins for having such kids. My aunt says that the first thing towards making a positive change is to accept that it is no one’s fault and that autistic kids or kids with special needs do not deserve sympathy. She rose above the problem, with her husband’s support and opened a school for autistic kids in Mysore. Now there are three branches and kids coming out of those schools are being hired by supermarkets, book binders, assembly line works etc.

    But it is heartening to know that things are getting better in India. Be it abled or differently-abled, everyone deserves to be treated with respect and has all the rights in the world to lead a decent and dignified life without being judged or insulted.

    Liked by 1 person

    • Wow, what an inspiration your aunt is! Most families find it difficult to make a decent life for their disabled child. Rising above that and being able to help others in similar situations takes unimaginable guts and patience and the strength of conviction and love. Kudos to Priya for this post, and to your aunt, Sandhya.

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      • Thank you very much, Pallavi. Yes, my aunt is an inspiration. She is now in her sixties. I admire her energy levels, her love towards life and her ability to keep herself busy at all times. What amazes me is that she remains positive, upbeat, and confident, irrespective of any situation. The entire family respects her and consults her when crucial advice is needed. She once told me “nothing is impossible. We just have to dust ourselves off depression, negativity and just keep moving forward. This has what helped me”. I remember her words, whenever I am down.

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    • Very inspiring to hear about your aunt’s confidence and taking the initiative to open schools. If you can’t find it, you go and build it. I like her kick-a** attitude a lot:)
      Heartening things are happening here too everyday. In the US, we’re moving from “tolerance” to actively embracing the unique talents of autistic people. SAP recently started a drive to hire programmers on the spectrum.

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      • Thank you, Priya. Yes, my aunt is a go-getter. It is amazing to see her energy levels, given she is in her sixties. She is always positive, cheerful and affectionate. I love her “don’t give-up” attitude. I have been to her schools and the activities the teachers and volunteers organize for the kids are really great. They just want the kids to lead a normal life. And the amount of energy and effort that they put into it is really amazing and inspirational!

        Guess in US the acceptance levels are higher compared to those in India. Here in Singapore as well, I see that kids with special needs are not seen as liabilities. Passers-by too do not give those “oh what a pity!” kind of looks. What puts me off is the “such kids are born because of past sins” concept in India. We just need to come out of that let kids with special needs live a normal life. As my aunt says “if you do not have anything good to say or contribute, at least do not say anything bad that demoralizes parents of kids with special needs. Just leave them alone, if you cannot support”.

        Liked by 1 person

  16. Great article, Priya! I must confess I often feel awkward around physically disabled people but mostly, I am curious about their lives. It’s entirely my own fault and something I need to work on.

    A lot of our perceptions about disability are also reinforced by movies and TV. I am strongly reminded of the scene in No Entry, where Anil Kapoor’s accountant loses his legs and has to take up painting. WHY? He is an accountant, not a marathon runner. Why on earth does he have to stop working as an accountant?! A lot of this stuff subtly reinforces the attitude that people with physical or mental problems are not to be trusted with important stuff and must be objects of pity and charity.

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    • True Fem. Maudlin movies have created flawed perceptions of disability.

      3 movies I love are A Beautiful Mind (about mathematician John Nash), The Imitation Game (about mathematician and the father of programming Alan Turing), and The Theory of Everything (Physicist Stephen Hawking). The latter 2 movies are recent. Do watch if possible. They gives us a great perspective on amazing minds trapped inside a fog of chemical/neurological imbalances.

      Anther one – “One Flew over the Cuckoo’s Nest”. An old movie, winner of 5 Academy awards. Very edgy, disturbing, but makes a larger (significant) point about dignity and human rights, and the dangers of authoritarianism. Brilliant performance from Louise Fletcher, in an unlikable woman’s role.

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      • Agree about the movies! I especially loved Theory of everything…It treats his disability as something being so “normal”. That is one of the reasons the disability did not stop him from doing the amazing things he did. And yes, One flew over cuckoo’s nest is a super film. I was so affected by it… The ending of the movie is so haunting…
        Did not like Imitation game so much..it portrays Turing as being an unlikable fellow which from what I read he was not in real life. Beautiful mind is one of my all time favorites!

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        • In Theory of Everything – he starts off “normal” so it’s even more heartbreaking. Because until one day, his life was fine and normal, then it started changing little by little. I loved the way his professors insulted his thesis (jokingly) before awarding him a Ph.D. They didn’t treat him like a china doll. They were neither in awe nor were they awkward. Everyone at the U ignored his disability and focused on his mind.

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  17. Dear Priya,

    I am coming out of a long self-imposed exile in blog sphere to comment on your post here. I am really glad you wrote this excellent post. My son, now three years old has autism and just like you mentioned, we went through the stages towards Positive Acceptance.
    Every day I am learning to look at the proverbial silver lining to some of the challenges that my son’s diagnosis has brought into our lives. For instance, we live in an EU country that has high quality services and special schools for children in the spectrum. But a large portion of these services are available in the local language. This meant that we had to learn the language as fast as we could so that we could easily access said help and resources. This has opened up new vistas for us like never before, like for example, getting to know our nice and helpful neighbours, making new friends through autism support groups etc. This would not have been possible had we had a neurotypical child!

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    • Great to hear this from you Mandooka! Yes, there is always a positive, helpful way of looking at things and glad to know you guys are finding supports and making friends. Hugs to your little boy and best wishes to your family!

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  18. Hi Priya,
    Thanks for this brilliant and enlightening post🙂
    Sadly, there is still a lot of stigma regarding disability. Access paths are more for meeting compliances than to actually meet the need. But as you said, things are improving.

    I recently watched ‘Margarita with a straw’. It’s a very candid story about a girl with cerebral palsy and take a very matter-of-fact approach. Do watch it if you haven’t.

    This article about Kalki Koechlin’s experience while shooting the movie, is also worth reading:
    http://www.bollypedia.in/news/Kalki-Koechlin-writes-about-her-experience-while-shooting-Margarita-With-A-Straw/619

    To quote Kalki herself, ” People in wheelchairs get drunk, people in wheelchairs smoke, party, wear mini-skirts, people in wheelchairs have sex. Two years ago I would have found this surprising, a year ago when I met Malini I found this fascinating and today I realize that it’s normal.”

    Liked by 1 person

    • Malyaj, yes, I read about her experience but haven’t seen the movie yet. As soon as I read it, I thought, wow, we ARE changing/learning/growing as a culture! The disabled protagonist is neither an angel nor someone to be pitied. She has a mind of her own and she intends to use it! I so look forward to seeing this life-affirming, honest, confident movie🙂

      Liked by 1 person

  19. Am a little late, but must add. People with disabilities are still people and deserve equal respect. They are special and unique in their own way. One of my relatives’ 4 year old son is autistic. Yes he is different from other kids, is a bit behind in speech and making up milestones normal for a 4 year old, but he’s a special kid. He’s getting better and is talking a little bit to people, though he likes to keep to himself and watch his IPAD haha. Overall he’s a good kid. I’m glad India is getting better about this aspect despite them ill treating and locking up disabled people in a room. Perhaps it’ll change the perspectives of people in many ways. Btw, I find the TV show “Aapki Antara” a great influence and eye opener about people with disabilities, since the show was revolved around an autistic girl. Loved it though.

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