Today, I am touching tough subject witnessing my own life style : Before I touch this subject let’s define autism:

Autism a developmental disorder of variable severity that is characterized by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behavior.

There are 3 levels commonly known ASD ( Autism Spectrum Disorder) level autism . Level 3 requires more care to autistic children/ adult . There is sever cases that demands more care .

These levels are based on a person’s strengths, capacities & limitations with respect to their abilities to communicate, adapt to new situations, ability to cope beyond restricted interests, and run day to day life.

There is severe autism too it’s not a diagnosis but it’s autism with higher degree of complexity When the term is used, therefore, it’s really just a way of describing a person’s level of functioning and need.

Here is real testimonies my life with my severe autistic daughter Suzie: Life with severe disabled severe autistic kids/adults mean it’s full time tedious job! As define above my daughter fall under sever autistic that needs 24/7 attention. She gets support country like USA such as life long social security benefit at early age on the top both by government/public funded supports such as certain hours of babysitting monthly, Time to time checking by government organization her status and support for schooling etc.

There are such similar supports in developed countries both socialists, social democratic & capitalist countries. But comparatively no such level of supports in least develop , developing countries. Those countries must put more support for autistic plus / disabled kids adults.

Here I want to give simple example of Nepal: As of March 2017, 199,490 Nepali citizens held the 2016/17 disability identification card (Budhathoki, 2017). However, the incidence of disability is thought to be much higher than this: the latest census, which was conducted in 2011, reported that 1.94% of the population –513,321 people – was living with some form of disabilit.

National Living Standards Survey report (NLSS), also conducted in 2011, estimated that 3.6% of the population were people with disabilities (CBS, 2011a; CBS, 2011b).

These overall figures are also well below global estimates, which suggest that 15% of the population has some form of disability. It is widely recognised that current figures in Nepal considerably underestimate the actual prevalence of disability (WHO, 2010) – though this challenge is not specific to Nepal: globally, indicators of disability vary widely depending on different methodologies used.

The low number of people with disabilities who hold a disability identity card is problematic because eligibility for specialised services and targeted programmes is dependent on ownership of this card. For instance, only people holding a red or a blue disability identity card (denoting the severity of their disabilities as assessed by the disability card process) are eligible to receive the disability allowance. Persons with disabilities holding red cards receive an allowance of 2,000 Nepalese rupee (Rs) a month ($19), while blue-card holders receive an allowance of Rs 600 ($6) a month.

It’s really not enough support need to do more and both right survey and right benefit. It’s serious subject .

BESIDE ALL STATISTIC HERE IS THE REALITY OF LIGR WITH SEVERE DISABLED PEOPLE IN MY CASE WITH MY DAUGHTER SUZIE:

Let’s do short cut not going back to history and my personal life.

Here is how I deal with it how I tackle day to day life:

1 . Once with Suzi means I need to give 24/7 full time attention .
2. She can not talk and understand what is going on because global delay in nervous system luckily she can walk and understand few things.
3. She is in diaper and still we are doing potty training for last 26 yrs as she has global delay and developmental delay it’s tough for her.
4. Physically she is strong and she can express her interest in food open refrigerator
Grab glass some time open tap get water for drink but non-verbal.
5. Her scatter development made her most complex some areas her development is like a one year kid some area may be 3-5 etc
6. Most tough part is unless she goes to bed she will be constantly in motion and action asking food, drink, then asking her to take in ride say driving around. She has some taste in music then she will ask constantly changing songs of her interest frequently.

7. Most challenging how much threshold you have ? She will be constantly changing her interest second to second one tine she may be asking food then drink them music then to go out then opening refrigerator then searching snack and so on. It’s continuous process impossible to calm her down stop as her energy and directions are random and created due to global mental delay without any logic and reason. It’s one of the toughest part.

8. How to intervene such activities ? First of all one shall know autism / severe autism and degree of complexity. With my experiences she gets hook up in one thing till we intervene . It’s autistic symptom they create frequently create their small world with their activities then their nervous system will kind of loop and they get lost on it. So distracting giving different information we can intervene for a while . But they will start new loop immediately so it’s constant process and tedious battle between autistic person and intervener. It’s an art that demands extraordinary patience and understanding them. With this methodology you can help them if one can not understand and do the right thing means it’s not a good news.

9. Their behaviors are unpredictable. For an example Suzi goes to day care center normally at 8 A. M. comes back at 2:30 P.M. All of sudden sometimes she may refuse to go to day care. At the same day say you have to go to meeting or work. Even in such cases you have to put your child first and your work second. There are lot challenges and you have to keep patience and love your kid and do your best. That demands lot of work tolerances & patience.

10. Their psychological behavior are completely different. I mean disabled kids/adults. In Suzis case technically no verbal and all of sudden she may pull you physically & ask something , grab anything such as cups, food equipment etc and drop anywhere at anytime no fix rules. You have to be careful & ready 24/7. So it’s crucial to understand them learn about them in order to handle the best way you can. So it’s not only crucial to help disabled people but immediate family , who is taking care them guiding, supporting and educating them to give the best services. It is very important to prevent disabled kids/ adults from any kind abuses. So special needs support and education shall be part of nationwide education program. In all normal schools there must be 3% scholarships for the special need kids.

There are more it will be hard to cover how to tackle when she will lie down on street unexpectedly? How to resolve it, When she gets hyper, when she makes loud noises & some people will call cops? There are many more to learn so being parents of disabled kids/ adults mean lot challenges that demands not only skills, patience but need to have strong determinations to take care them at any situations at any time.

Many people due to lack of understanding-them may do physical force that will not be acceptable at all . So special need education for helper of such disabled people must be mandatory in schools/ group home or day care centers.

On the other hand people with disabled kids/adults will have tough life. Cases like mine I relax only after my daughter goes to bed.
Imagine how such family can survive.

Anywhere in the world and anyone will have to face the same situations. Country like I’m USA there is choices you can put such disabled person in group home but it’s personal choice. I decided to take care myself with other hands that concern my daughter , where I am confident that I can give better life together with extra hands I have. Luckily still I can work how I schedule. How I do is miracle plus definitely extra hands I have credit goes to them too.

This article is possible reason my suzi in bed got some free time to conclude it. I want to tell something, I honor all one who is handling disabled people in this world. It’s tedious job let them have more strength skill and knowledge, patience to handle all disabled person in the world with love giving them best life.

They are dysfunctional disabled they heavily rely on us love them every moments you could. Concern counties & government support & do best you could disabled people and their helpers. Without such support it’s an impossible to carry on such work snd help disabled people in this world .

My call to the world put 1% minimum of National budget to support disabled people of in each country. They deserved it. If WHO considers world data shows 15% of people in the form of some kind disabilities mean it’s already serious issue and world attention shall be there to figure out to make it less and provide required supports as stated above.

– Saroj Joshi
– Editor KS