Down Syndrome - Caring For The Caregiver

Any mother, or expectant mother, would know the apprehension that arises during pregnancy when it's time for the 12th week Down Syndrome screening. There are several questions that one is suddenly faced with if the test results come out positive, will my child be accepted in society, will I as a mother be able to meet all my child's needs or will they be able to lead a normal life?

While parents go above and beyond trying to figure out what's best for their child, it can be stressful, if there is not adequate support. Amongst families that have children with Down Syndrome (DS) in India, it is mostly the mother’s who single-handedly bear the responsibility of caring for the child.

Not often does one realise the importance of support from within the family and the society, and how far it goes in making the journey easier for the parents and the child. The Citizen spoke to some mothers who have successfully raised children with Down Syndrome to understand how their experiences were and the challenges they continue to face.

These women have spent years changing the narrative of fear and apprehension into hope and positivity, allowing their children, and others like them to thrive.

Down Syndrome (DS) is a condition in which a person is born with an extra chromosome. Children with DS have distinct facial features, developmental delays and medical conditions like digestion issues, heart disease and thyroid problems.

In India, every year, about 1.3 lakh children are born with this condition. Yet, even today, a lot of parents are unaware about the condition and have no clue or guidance on what to do once their child with DS enters their lives.

The most common challenge parents face is the lack of guidance. Most parents struggle to figure out the best course of action for their child, finding the right therapists, the right school, and treatments. For instance, Prachi Dev, Founder of Nayi Disha spoke of how some parents who come to her for counselling don't even know that DS is incurable and ask if there were any medications that could cure it.

Rekha Ramachandran, President of Down Syndrome Federation of India said, “parents need support with medical intervention. Most children have heart issues, digestive issues, thyroid issues, some may need surgery and therapy.” Rekha said that in the first ten years, the child should get regular check ups every year.

However, it's not always easy to find the right place to go to. Most children also face issues like hypotonia, constipation and respiratory issues.

She also spoke about how there's a lot more scope now than earlier to treat medical issues. “Forty years ago, we didn't understand all these medical issues. If a child has hearing or vision issues, they'll never be able to sit in a regular classroom. We didn't know the gut would be different, there would be constipation, respiratory issues, hypotonia.”

According to Prachi Dev, “children with DS also have problems learning to suck well, then there are development delays like walking late. The primary therapy is physiotherapy, then there is occupational therapy, learning the art of being independent like eating by yourself and speech therapy."

Sana Dev, a mother who also counsels parents who have newly diagnosed kids said, “my son is 15 years old now, and was born with Down Syndrome. I found out right before my delivery. There was a doubt, but I didn't want to get any invasive tests done because I had twins and it could affect the other one.

“Only after they were born, we could do the blood mapping and we knew for sure. My first feeling was fear of whether I would be able to give my child everything he needs. I worried about whether I was doing the right thing for both my kids."

She added that she moved from the United States to India when they were about one and a half and that there was a lot of confusion back then. "Therapists had no idea what they were doing. Physiotherapists didn't know how to handle the child. There was no proper outline as to what steps to take.

“There is more awareness now, but with regard to therapy, there's still a long way to go. It is a big struggle to find the right therapist. There are a lot of people who simply put up boards, but we don't know if they are really qualified. It's not a single formula for every special needs child. So therapy needs to be specific."

A lot of it has to do with awareness. A lot of families hear the word for the first time. Rekha said that doctors and therapists need to think about it from the perspective of a new parent. "Parents have so much hope and dreams for their child, but all that goes when they hear their child has Down Syndrome.

“Unfortunately, the paediatricians are also not empathetic. When they share information, they don't sound hopeful. They are told the child will be vegetative, that they won't learn much. Of course, you have to be realistic. But children tend to do much better when they receive the right intervention at the right time.”

She added, “it is a difficult time for the parents, they are trying to look for resources. At the same time, children also have compromised health, especially in the early years. They spend a lot of time going to the doctor. It's a difficult time for the parents.”

Many parents also get duped into fake therapies. It digresses parents from real therapy that can bring real change. "There are wrong outlets which keep promoting stem cell therapy as a cure. It is very well established that there is no cure. Poor vulnerable parents fall prey and lose a lot of money, even selling their house," said Rekha.

Many parents also spoke about how unfair it was that insurance companies exclude genetic conditions. Therapy centres don't offer any subsidies and therapies and other treatments can cause financial strain on the parents.

Sana said, “there needs to be a lot of physiotherapy done, especially in the initial years. Most centres don't give subsidised therapy. Most children need about six sessions a month and each session would cost about Rs 700. That is a lot, especially for lower income families.”

Fortunately, there are several organisations like Nayi Disha and Mathru Mandir that handhold the process throughout life and even help out with the finances. "Everything needs money. Whatever the intervention is, we will support," said Rekha.

Lack of sensitivity from doctors was another challenge a lot of mothers faced. Imagine the first thing a doctor tells you is that everything is wrong with your child, that nothing good will happen, that he or she won't even live long. There is a lack of empathy.

Many times, hospital staff are not trained to deal with children with special needs either. Sana recalls one experience. “the staff in the ICU don't know how to handle the child. He had a chronic cough. They said it was bronchitis and admitted him, but when his oxygen level changed, they put him in the ICU without asking us.

“The doctors in the ICU had no clue how to handle a special needs child. They didn't understand he had sensory issues, that he would have anxiety in a new environment. It was so traumatic for him, that at one point we thought we lost him. Hospitals need to educate their staff and train them. Even now when I take him for vaccinations, it is quite difficult.”

Dr Nina Piyush, a paediatrician and mother of a DS child said, "It is important for the paediatrician to congratulate the parents on the new arrival. It is a long-awaited pleasant moment for them. Let them celebrate it. Assure and encourage them to face reality."

She also spoke of how mothers need a lot of support, even counselling to go through all the emotions. Mothers who have children with DS face a lot of criticism and judgement from society and even within the family. There's a lot of blame thrown around.

Prachi said that the first thing many mothers hear is that the condition must have been passed on from her side of the family. They go on to hear comments like it's their fault this happened, that they didn't drink enough milk during pregnancy, that they didn't eat right, etc.

They're also told the child won't live too long or won't amount to anything. Prachi recalled how a doctor who met her 32-year-old brother with DS sarcastically remarked “oh he's still alive?”.

She added that a majority of women are choosing not to proceed with the pregnancy. "It is definitely not an easy decision to make."

Sana added that mothers also take a lot of guilt. "Say the child has a little breakdown or tantrum in public, they feel so apologetic. They feel it is their fault. Society can be cruel. Everyone immediately looks at them with critical eyes.”

Organisations like Rekha's Mathru Mandir help parents through the whole process. Advising parents of young children with DS, Rekha said, "Never keep yourself alone and aloof. Your initial pain is yours. You will have time to go through the grief. But it is not the child's fault.

“There have been so many people who came to me wanting to give up the child for adoption. Why should the child go through that trauma? You know how painful it can be? So we work on the parents. We don't work on the children.

“I focus on working on the strengths of the mother without making her feel offended and letting her know that there is support. I tell them you call me anytime, tell me what it is that's bothering you, we will help and handhold them right through their lives."

She added, "Suppose I am in denial, it won't help. That acute pain and grief, that my child will never be accepted is all my own doing. One needs to be open. We offer medical intervention, therapeutic intervention and financial support."

The impact of parent support groups is also huge. It really helps ease the stress. Prachi said, "Our parent support groups mean a lot to the parents. That gives them inspiration and hope. They hear about daily practical challenges and how to deal with them.

“We also have training programmes on various issues from getting a disability certificate to dealing with day to day challenges. A lot of mothers are fighting the battle alone. Many fathers are quick to wash off their hands. The mother has to struggle with taking the child to therapy. It was her full time job in the early years."

Kalpana said, "The reality is that when it comes to caregiving, it is the mother who takes the brunt of it. It is important that fathers become a bit more flexible. I know of families that have come apart because of a lot of blame and the child is impacted because of that.”

However, speaking about facing judgement from society, Rekha said that judgmental attitudes will always be there. "We live in a place, where even if a child has a slight lisp, there are going to be comments about it. You can't escape that. It is the fear of the unknown that forces us to back off.

“Why don't we just go around talking to people, creating awareness? If you tell children, will you be a friend to a child with Down Syndrome, they will jump to do it.

"When doctors tell you your child will never do this, it is not true. The methodology that you use with every child is different. We have to find out what my child is comfortable with. My child had a different way of walking, dancing, but she said that was her style.

“But we have already been brain trained that this is the way things should happen. My child taught me that just because she does things differently doesn't mean she doesn't have the same emotions."

Kalpana Kannan, another mother said, "We discovered that our daughter had Down's Syndrome only after birth. Today, parents can be better equipped because there is a lot of awareness and wisdom from other parents in the same boat. We took it upon ourselves to understand what our daughter is going through, educate others, empower people around her.

“We created a ring of protection around her, keeping a positive approach and attitude. That helped us overcome a lot of challenges. You cannot change society overnight. It's important to start with the immediate circle. However, the parents have to be prepared to face some amount of criticism and judgement and also prepare the child to face it in the future."

As the kids get older, getting admissions in school also becomes a struggle. "The problem is acceptance and equal opportunities with regard to schooling. A lot of schools say they are not equipped, meaning they don't have special educators, and don't take the child in.

“This lack of acceptance also happens on the playground and later on in their careers," said Prachi. She added, "Why are children not getting admission? Because teachers are not sensitised. They meet a child with a disability for the first time and they're lost, they don't know what to do.

“But if it was a part of the teaching curriculum right from the beginning, at least to be able to address ten percent of the issues of children with special needs, it would go a long way. If we could train regular teachers, it would make a big difference."

Rekha said, “the word special educators is starting to kill all of us. It is very expensive, even if you insist on it. Look at the amount of pressure you are putting on schools. We tell parents to instead identify a special educator in their area who they can go to after school hours.

“Of course our children need support. But there are a lot of special educators available who don't want to be associated with schools because they will not get the respect they get outside. Don't put your child in schools that you children can't cope with.

“We are trying to scrap the idea of special educators. If these teachers can come home and go at the child's pace, that would be enough. The child is always open to play therapy, they will learn everything through that."

There are other parents like Kalpana who have tried other approaches to education. "There are some children who are able to cope with academics and some who are not. For our daughter, we explored vocational training, pre vocational training. Although she is not well versed in reading, writing and arithmetic, she does have functional skills and is able to be independent."

Rekha also added that the Montessori system of education works great because the teachers go at the pace of the child.

For parents of older children with DS, another concern is who would take care of them once they pass away, or whether their children would be able to find partners and start a family. Prachi said, "My parents are old, so I'm now the primary caregiver for my brother. Children who receive early intervention at the right time go on to become much more independent.

“There are various ways of attested living that are becoming popular now. But we always tell parents to plan for the future, plan financially, decide who the guardian would be and make arrangements accordingly.”

Speaking about relationships, Rekha said, "We started a group called ‘Humsafar’, where families of children with Down Syndrome travel together. We found that persons with Down Syndrome are only comfortable with people from their own group as nobody else would understand them.

“Earlier, in India, families weren't meeting. Today we have 6,000 people in this group. Every year we all meet, the boys and girls have an opportunity to meet and stay in touch. One couple recently got engaged and will soon get married."

Rekha also emphasises on how the whole approach to raising children with DS needs to change. She says that treating them just like any other child would be the best thing for them.

"Forty two years ago, there was no testing. We never had all the complications that this generation has. We just went ahead and gave birth. Even after they were born, we didn't know they were any different. We tried to raise them just like everybody else.

“Of course, the doctors tried to confuse us, telling us that this child might be so and so, but I'm one of those people who believe that this child has come into my life, I don't care if he or she is different.

“To me, it was ignorant bliss. Sometimes when you don't know, you lead your life happily. In villages, they don't care if the child is different. This is where the problem arises. There is too much information, too much negative information, too many people telling you your child can't do this or that. None of that is true.”

In Rekha's words, "If you are happy and just keep transferring your energy to the child, he or she will be the most beautiful thing in the world."