Supporting Parents Of Children With Special Needs – Part 2: Take Care Of Yourself And Connect With Others While Raising Your Child

Who can forget the heartwarming 2007 Hindi film Taare Zameen Par, which showed the plight of a dyslexic 8-year-old child, Ishaan? His father believes Ishaan is lazy and naughty, so he packs his son off to a boarding school where the child meets an art teacher, played by Aamir Khan. The teacher realizes that Ishaan has a learning disability, discovers his student’s artistic talent, and helps him bloom.

Like Ishaan’s father, many parents may not suspect dyslexia in their child who is having trouble with reading or writing. When their child is finally diagnosed with a learning disability or some developmental disorder, parents feel devastated and confused.

In an article titled ‘You Are Not Alone,’ published by the National Dissemination Center for Children with Disabilities (NICHCY) in the US, the author Patricia McGill Smith—mother of a child with special needs—explains the various emotions parents may feel on learning that their child faces a challenge. The first emotion may be denial: How can this be happening to me, to my child? What follows may be intense anger triggered by grief. Fear is another common reaction—fear of the unknown and fear of social rejection.

Parents may also feel guilt, believing that they may have somehow caused the problem, writes Smith. They may feel confused if they are bombarded with technical stuff without proper explanation. When parents realize that they cannot change the fact that their child has a disability or disorder, they may feel helpless. Disappointment and rejection of the child are normal reactions, but these could be very detrimental to the child. Smith’s message to parents is simple: All these feelings may flood your minds and hearts at different points of time and you are not alone in feeling them.

How parents react to the diagnosis

Dr Roopa Srinivasan, director of developmental pediatrics and head of clinical services at Ummeed Child Development Center (Mumbai), says, “Most parents, even if they haven’t received a formal diagnosis, have been suspecting that something is different about their child. They might have read up on the internet, so they have their worries and concerns. When they hear the news, their suspicion is confirmed. It’s a very difficult moment for them. The first response I have heard from many parents is that their mind went blank after hearing the diagnosis. They were unable to process any more information.”

A small section of parents said they felt relief when they found out at last what was different about their child and what they could do about it. For professionals, it’s important to remember to check at every stage how the parents are doing and clarify any misperceptions, Dr Srinivasan explains.

Dr Sumithra Prasad, counselor and founder-secretary of DORAI Foundation in Chennai and mother of a child with special needs says, “It’s difficult to cope when you learn that your child has special needs because you’re not prepared for this eventuality. Also, it’s not a temporary issue but something you have to live with for a lifetime. Parents usually feel utterly helpless and clueless as to what has caused this situation and what has to be done. It’s not just the parents who need counseling but also siblings and grandparents. Rehabilitation starts with the family.”

Where can parents get support?

Once a diagnosis has been made, a multidisciplinary team is put together to address the needs of the child. Parents of special children should reach out to other parents in similar situations, either directly or through a support group. This way, they will get authentic information on the challenges they may face while raising their child. No one will understand their emotions and situation better than another parent of a special child.

In addition, parents must not hesitate to reach out to close family members (their own parents and siblings) and friends for support. Needless to say, parents of the child have to support each other at all times. They can seek the help of a counselor themselves if necessary.

Approach toward raising a child with special needs

“The approach should not be to ‘fix’ the child. The disability is an inherent part of the child’s personality. A child may be in a protective bubble at home and the therapy center. But once they step out into the real world, they may not be accepted. The park, a neighbor’s house, or even their school may not be inclusive. We are advocating that a special child should find a place in a world that appreciates neurodiversity. For this, we need a support system of family, other children who can befriend special children, neighbors, and teachers,” explains Dr Srinivasan.

Dr Prasad says it’s also important to “take a child-centric, holistic, multiple-intelligence approach to the child’s development.”

Tips for parents raising a child with special needs

As the parent of a child with special needs, you too have special needs. Apart from more time, energy, and money, you need to have more patience and resilience. Here are some tips and self-care strategies that will help you take care of yourself and your child:

1. Don’t strive to be a superhero: Be kind to yourself when you are feeling disappointed or stressed about the situation. Also, you may need to slow down the pace of life to cope with the extra challenges you are facing.
2. Accept your child is different: What your child needs is your unconditional love, and this will come with acceptance. Tell your child about their disability at an appropriate age. Feel happy about every step forward your special child takes, however small. Avoid comparing your child with their peers. Stop worrying about what others think about your child. Focus on your child’s abilities.
3. Keep your child’s brain stimulated: Talk to your child (even if they can’t understand you), play games, tell them about their immediate environment, smile at them. Explain the household chores you are doing. Encourage independence. Once they are older, assign chores around the house that they can do safely. This will give them immense confidence.
4. Have fun with your child: It’s very important to have happy moments and laughter to balance the struggles you may be facing as a parent. Play silly games with your child, cuddle up and tell them a story, or go out to have ice cream. Try to keep things as natural as you can.
5. Pay attention to siblings and your marriage: Ensure that the sibling of a special child does not feel neglected. Give your marriage time and attention as well.
6. Equip yourself with information: Do your own research and ask professionals who are addressing your child’s needs for any information you need.
7. Work closely with professionals: This would include your pediatrician, specialists, psychologists, special educators, a special school, teachers, physical therapists, and occupational therapists. You know your child best. So, your inputs will be valuable in achieving progress.
8. Don’t shut family and friends out: Allow your family members and good friends to get to know your child. Don’t hide your child or seclude yourself because you feel worried about how people will react.
9. Find caregivers: If you and your spouse are working, you may require a full-time caregiver. Even if you are at home, it’s a good idea to have a caregiver for a few hours a day to give you respite and a chance to spend time on activities you enjoy—whether it’s going for a jog or reading a book.
10. Self-care is important: Take care of your own physical and mental health. Connect with good friends and don’t forget to laugh. Laughter is the best antidote to anxiety and stress.