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 give up your seat on the bus.

And that’s how you deal with mean people, but 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

 

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