Every child is special, so am I... Accept, Nurture and enable me... I will grow up to be my own person, as time goes by...
Children do not care how much you know... Until they know how much you care...
Children go through predictable stages of development called Milestones . This happens because their brain develops at a certain rate.
Babies begin to:
- Crawl
- Sit without support
- Recognise parents
- Respond to own name
- Copy sounds:
Babies begin to:
- Pull up to stand
- Utter small words
- Copy gestures
- Understand simple commands like ‘say bye’
Babies begin to:
- Walk without help
- Scribble with pen/pencil
- Recognize colours
- Recognize simpl objects like phone, spoon etc
Children begin to:
- Count numbers
- Ask a lot of questions
- Eat on their own
- Tell when he/she wants to pee or do potty
Children begin to:
- Recite all poems
- Tell stories
- Play sports with other children
- Remember phone numbers and address
When a child’s mental development is slower or does not develop as much or at the pace compared to other children of a similar chronological age, it is called Intellectual Disability. In other words the child has Belowaverage intelligence. This condition was previously called Mental Retardation.
Children with ID show gaps in the following areas :-
1. Slow on milestones -
At birth, most children with ID seem like any other healthy child. The signs of intellectual disability may appear during infancy(i.e upto 2 years), or it may not be noticeable until a child reaches school.
As they grow, we begin to notice that they are taking longer to learn, to speak, walk, and take care of their personal needs.
I may take a year to accomplish what another child of the same age can do in three months. There may be some things I cannot learn.
A child with ID might show the following de cits in -
De cit in reasoning & logical thinking
Easily distracted
Di culty in understanding & speak simple language
Di culty in grasping new & abstract concepts
Speech di culties
Di culty in remembering things
Limited vocabulary
Slower motor movements
Di culty in ne motor movements
Learning
Shorter attention span
Ability to intergrate & generalize
Di culty in connecting action with consequences
De cits in skills necessary for day-to-day life and adapt to the world around -
Getting Dressed
Coping with sudden changes
Using the bathroom
Understanding what is said and being able to answer
Social skills with peers, family & other people
Feeding one’s self
Keeping track of time & following the routine
The intellectual functioning of a child can be measured by a test called an IQ test. IQ stands for Intelligence Quotient. Various types of standardized psychological tests are used for the assessment of intellectual disabilities.
Test score: Intelligence QuotientMost children will get a score around 100. Those scoring below 70 to 75 are thought to have an intellectual disability.
There are varying degrees of intellectual disability, from mild to profound .
Take the child to the nearest hospital with this facility where a specialist will assess the intelligence level and arrive at the exact extent of disability.
Many times children with ID may show some other di culties -
Muscle control, coordination, re ex, posture and balance is poor and this e ects their body movements.
Vision Impairment
Sometimes their eyes don't develop properly and so have di culty in seeing, reading or doing activities that have to be done precisely.
The brain gets disturbed sometimes and they get a seziure, during which they show unusual behaviour, and sometimes fall down, froth at the mouth and have loss of awareness.
They have di culty in saying some syllables or sentences etc. so often they speak slowly.
The body does not develop in the way other’s bodies do because of which they may not be able to hold a pencil/pen and write properly, or pick up small items with ngers. You may see them bumping into others or falling o a chair.
Since their hearing ability is sometimes a ected, they can't hear clearly what people are saying, or which direction a sound is coming from.
Even with advances in genetics, a speci c cause of ID has not been identi ed. But there seem to be a wide variety of probabilities -
The common factor is that something interferes with the growth and development of the brain.
Genetic conditions Environmental conditions
Problems beforepregnancy or at the time ofconception
Problems that occur during pregnancy
Medical conditions
Factors immediately after birth
Complications during birth
The more we learn and understand, the more we can help ourselves and the child.
1. Examine our beliefs and educate ourselves -
First let’s examine some common beliefs around this disability to understand what doesn’t work!
Mental retardation is a contagious disease
I think, Mental retardation is a mental illness.
No, It is neither a disease nor contagious. It is a condition arising because of some genetic or chromosomal abnormalities or damage to the developing brain system. It cannot be “treated or cured”
Not at all! They are just slow in their development
Isn’t it the result of possession by some evil spirit?
Ha, ha….no no, these are cultural beliefs and have no scientific basis. ID cannot be “cured” through faith healers.
My grandmother says that it is actually the result of bad 'karma' and hence nothing can be done about it.
That’s not true. Early intervention and appropriate support and training can help them do many activities on their own.
I have heard that they cannot learn.
All children learn. They learn at their own pace and in their own time. Providing a positive environment which supports learning will help a child with ID learn more and faster.
Such children develop very little emotions and so they cannot feel much. Right?
Infact, they are capable of full range of human emotions. They can be vulnerable and sensitive, probably even aware of our fears, attitudes and prejudices towards them.
Is it true that marriage solves the problem of mental retardation? Many people believe that sexual satisfaction will cure the person?
Certainly not! It only complicates the problems as the young adults with very low IQs may not be independent enough to take all responsibilities of a family life.
Severely and profoundly mentally retarded children must be locked away in institutions for their own and society's safety. Is that the right thing to do?
Never! The most effective environment for everyone to learn and develop is one which is in the community and which offers a family-like atmosphere of care and nurturing.
After all, they will never get a job or live independently
Don’t be surprised…More people with intellectual disabilities are employed and live independently than ever before.
Oh….I was carrying so many misconceptions! Now I see it clearly!! The children with ID can be helped and progress well if their strengths and interests are recognized and supported to achieve their full potential so they may function in an optimal manner.
Understanding the exact extent and nature of a child’s disability helps us to be realistic and to manage & support them e ectively. It will allow us to organise and provide the right care (kind, duration etc) that is useful for the child. Here are the levels of disability and support to be provided-
High level of support for all activities of daily living, possibly including extensive nursing care needed.
Daily, ongoing support needed.
Support such as a day program in a sheltered workshop is needed.
Occasional support needed.
Once the level of disability is understood provide the support she needs.
Hygiene
I will help with daily activities like brushing, bathing, washing, handwashing etc.
Toilet use, especially for menstruating girls.
Getting ready for school
Wearing underclothes, getting ready for school, hair oiling, braiding, nail cutting, wearing footwear etc.
Help her to pack for school.
Engaging in the routine Safety
Eating or feeding
Ensure equal play, rest and sleep
Ensure she takes medicines regularly
Meeting family members
Help her to participate in day to day routine including committees, balsabha etc.
Ensure that she stays out of danger.
Help her to understand good and bad touch.
Train her to call out for help when in trouble.
Encourage the child’s independence. Let her try new things and encourage her to learn things by herself.
Children with ID nd it hard to sit in one place and do an activity for a long time. The schedule must have short activity times, and must alternate between physical,sitting down and cognitive activities
Encourage use of “comforters” (e.g, a favourite item she likes to carry or self-soothing, such as rocking or standing)
Provide guidance when its needed and give positive feedback when she does something well or masters something new.
Apart from identifying and accepting what she cannot do, understand what the child CAN DO , what she likes, what irritates her, what excites her, when is she most receptive etc. This will help to know what to expect and not feel overwhelmed or frustrated, rather to put our focus on sharpening the natural strengths of the child.
Depending on the degree , children with intellectual disabilities vary greatly in their ability to understand and communicate their needs, discomforts and concerns. We will therefore need to adapt our communication to each child’s level of functioning and understanding.
• Speak slowly.
• Do not shout, be respectful at all times.
• Give concrete , not abstract instructions.
• Use simple words and sentences.
• Demonstrate what you mean and the opportunity to try things out.
• Praise the child when he or she attempts or does well.
• Communicate one-on-one, when instructing.
• Break down jobs into smaller steps. Tell the child what to do, step by step, until the job is done.
Demonstrate & assist as necessary.
• Be aware of any non-verbal messages you are giving the child.
Due to the multiple, chronic and complex nature of health conditions of children, regular comprehensive health support and assessments should be done and closely monitored.
• An individualised child health record should be strictly maintained and updated without fail so that the medical information is all available at one place.
• Pay special attention to: - Immunisations - Allergies - Drug reactions
• Always accompany the child, even when they are going for routine check - ups.
• When taking for medical checkups plan for a longer appointment, or several short appointments.
extra careful as some children don’t or are unable to express what they are going through . During checkups, explain to the doctor how the child communicates or opens up .
Ruby is a child with severe intellectual disability. One day she began hitting herself the on side of her face. It was seen as one of the occasional odd behaviour typical of someone with a severe intellectual disability. A week later, the doctor discovered that she was actually su ering from an infection in the gum.
Additional Support -
• Speech therapy to help with any speech or language problems.
• Physical therapy to improve balance, hand-eye coordination and motor skills.
• Emotional health therapy to help with emotional development and regulating feelings, such as anger, so as to avoid aggression.
• Occupational therapy to develop fine motor skills and focus on activities such as feeding and dressing.
The educational goals of a child with ID may have to be worked out di erently. There are some regular schools that admit children with borderline intelligence, but many don’t. In such a situation, find a school that suits the child’s needs best.
Based on the level of ability, special educators will identify e ective methods of teaching this child, ways to adapt the curriculum, and how to address the unique level of disability.
Once the school is located, understand the facilities provided -
Maam I have a few questions...
What services will the school o er?
Will you provide transportation facility?
What are the school timings?
What is the fee and are there any options for scholarships?
What is the procedure for admission and when can I admit the child?
Yes, let me answer all your questions one by one
Work out the logistics -
• How the child will be got ready for school, for e.g- what and who will support the child with bathing, grooming, dressing, packing back etc.
• If transport arrangements is not available from school, what are the arrangements one will have to make for the safety of the child.
• A trusted transport should be arranged and a responsible person should take charge of bringing back the child each day.
Prepare the child -
• Discuss with the child about the school and the related arrangements.
• Tell the child what to do incase of an emergency.
• Introduce the child to the teachers/ principal.
• Introduce & show her around the school campus, class rooms, sta rooms, toilets, bus boarding point etc.
• Tell the child what to expect, at each step of the day.
Meet the family and share & discuss the plan – Keep the family of the child informed about the plan and share regular updates with them.
Continued school support -
• Organize any special assistance, physical aids etc that the school may request for from time to time
• Spend time with the child regularly, understanding and support with schooling.
• Look up the daily diary to check for instructions or messages from the teacher.
• Meet the teacher atleast once a month.
• Understand how she is progressing, give constructive feedback to the school, counsellor and those concerned.
As with other children, an Individualized Care plan (ICP) is very important for children with special intellectual needs.
• The first step of the ICP is to assess the needs and abilities of each child.
• Formulate a plan to strengthen abilities while reducing the impact of limitations.
• The main objective of the ICP is to create a match between a child's environment, and their abilities.
• Review and update the individual child care plan on a quarterly or half year basis.
While looking for ways to help these children, remember that we have to teach them to help themselves!
Our task as a Sneh Sathi is not to “cure” the disability, but to give the child the social and emotional tools they need to go through life and its challenges.
Independence is not just about finishing school and doing a job its about my ability to -
Keep myself safe
Maintain personal hygiene
Perseverence to keep going despite challenges & failures
Keep up with a routine
Try to cope with stress
Ask for help when I need it & reach out to others for support
Like all children those with disabilities need love, encouragement, and support. These can ensure that they emerge with a strong sense of self-worth, confidence, and the determination to keep going even when things are tough.
The Government of India has notified guidelines for evaluation of the disabilities to ensure that the children and persons with disabilities obtain disability certificates.
Based on this several government concessions and benefits can be availed. For each category of concessions, eligibility requirements, magnitude of the assistance, definition of the handicap, clear guidelines regarding application form, procedure of availing the benefit etc. are clearly given by orders issued from time to time.
Some of these include-
1. Children’s educational allowance
2. Assistance for purchase / tting of aids and appliances
3. Preferential allotment of hou sites
4. Travel by rail along with one escort
5. Free bus pass with one escort
6. Scholarships
The following allowances and facilities are provided under the Integrated Education for Disabled Children’s Scheme.
• Books and Stationery allowance of Rs.400/- per annum.
• Uniform allowance of Rs. 50/- per annum.
• Transport allowance of Rs.50/- per month (if a challenged child admitted under the scheme resides in a hostel of the school within the school premises, no transportation charges would be admissible).
• Reader allowance of Rs.50/per month in case of blind children after class V.
• Escort allowance for severely handicapped children with lower extremity disabilities at the rate of Rs.75/- per month.
• Annual cost of equipment subject to a maximum of Rs.2000/- per student for a period of ve years.
Care is the backbone of our relationship with children and is central to their emotional well-being. This booklet is a part of a series that will inform us about how we can extend the best care to the children so that they can heal their traumas, attain stability & rediscover themselves, evolve and ourish.
Let us discover the joy of working with children...
Rainbow Foundation India Association for Rural & Urban Needy H. No. 1-1-711/C/1, Opposite Vishnu Residency, Gandhi Nagar, Hyderabad - 80 Ph: 040 27660017 | Website: www.rainbowhome.in
