Empowering Special Needs Families Through Inclusive Moms Community

I was deeply touched and surprised when I read about Aditya Tiwari, who created such an inspiring impact on many of us. He wanted to adopt a special needs child (Down’s syndrome) at the age of 27, but our Indian government knocked off his plea stating that he’s not a celebrity, and that he’s a common man. Also, he did not qualify the minimum age limit of 30 years as per the our adoption laws in 2014. The way he fought for his cause and succeeded in finally adopting Avnish Tiwari in January 2016 is praiseworthy! Little Avnish was 4 years old and is a lucky boy because he is gifted with such a wonderful dad, in a situation where his biological parents abandoned him in an orphanage at the age of 5 months.

Being Mom to a special child, I had been exposed to a variety of experiences each time I met a stranger. My family is my strongest support and that’s the only reason I’m in a situation where I get the best of worlds – a happy family and an actively running career. My extended families are also highly educated, well-informed and open-minded, so it made my job easier in helping them understand how different the needs of my boy can be and how they could actually be a part in helping him succeed!

However, it’s saddening to see the awareness levels in the general public regarding special needs care. Right from knowing what it means to standing in support for special needs parents, there is a dire need for people to learn so much about letting special families coexist in the society.

In a modest attempt to give you an idea into what a special needs parent thinks and how you can give them a listening ear and a helping hand. If you really want to make a difference to our country and make it shine, explore the world of special needs. If you need your child to grow up to be a good human being, show them the world of special needs.

Questions NOT to ask a special needs parent:

1. Is yours a consanguineous marriage?

Well, we’ve heard enough of that question from doctors and we’re tired of answering it. No. And special needs child can be born to anyone today, thanks to our lifestyle changes, food adulteration and groundwater contamination. There is no way to prevent it except ensuring humanly possible care and praying. It’s the way governments have been lobbying to benefit industrialists and middlemen. The produce we get for consumption is highly priced, at the same time, with questions on it’s quality. Fruit and milk are also not spared today, it’s a disgrace to our system!

2. Is he/she normal?

This is a meaningless question unless you genuinely could not already make it out. When you clearly see that the child seems unwell, what could be the goal in asking a parent that question? I understand that people ask because they’re curious. But it’s high time we make an effort to show empathy, with grace and maturity. Otherwise, that one question from you can really make the parents revisit the whole of their traumatic experience, right from ignorance of the problem to medical diagnosis to everyday dealing with it. Instead, you can try to talk as normal as possible. Appreciate how beautiful the child is and ask the child or the parent about what he/she likes to do, about their friends and other activities.

3. Are you planning for a second child?

Well, it’s a very personal question. I personally believe that giving a sibling is a great gift for our children. Your child always has someone who can call and ask how are you, even when you are no more in this world. This need not be for special children alone. It applies to all parents and children.

4. Don’t pour in all your sympathies to the parents. It doesn’t help them in any way. Expressing concern is okay but it helps better to ask if they need any assistance from you and tell them what you can do for them – Can you teach their child for an hour every day? Can you take the child on a field trip to a supermarket nearby? Can you have a cup of coffee together? Because these are the small things that will make them feel included and accepted. Sympathy is the last thing they want to listen to, without any actual effort to make a moment brighter for them.

5. How will he become independent… Who will take care of your child after you?

That can be offensive. Don’t forget that this is one big question that haunts all special needs parents, even in their dreams. However, this life is not created by us. When there is some superpower that has instilled life in each of us, the same superpower will deal with it – be it in the form of the child’s parents or anyone else destined for that purpose. Don’t bother about things that are not under your control. Be good, do good and trust that all the good will come back to the child – be it yours or theirs.

Some things that you can do before/during/after pregnancy to have a healthy baby/toddler:

1. Adopt a healthy lifestyle and eat everything home-cooked.

2. Take folic acid+iron from 2-3 months before, if you’re having a planned pregnancy

3. Vitamin Supplements: Take all your calcium+vitamin supplements during pregnancy. Do not miss them at all because we hardly get 5-10% of the nutritional value from the food we eat today. Supplements are a must. Iron and Folic are for your baby’s nervous system growth and calcium is for your bone strength/baby growing inside you.

4. Delivery methods: Be well informed about your delivery methods – normal or c-section doesn’t really matter these days. I know of many special needs children being born from vaginal delivery too. You must be aware not to cause fetal distress in an attempt to adamantly have a normal delivery. Hypoxia is a condition where the baby inside the womb suffers from less supply of Oxygen during the first few seconds after delivery. These few seconds are the deciding factor for the baby’s life and future. First cry immediately after birth is the main parameter to understand if the baby got enough Oxygen from the outside world. Babies showing normal development in fetal scans can also develop special needs situations due to Hypoxia.

5. Vaccinations: Be aware of all the vaccinations you are giving your child. There are studies showing that certain vaccinations can also cause developmental delays in babies/toddlers. This is rare but possible. So, please ensure you have the complete picture of which vaccination you’re giving your child and why. Always clarify every detail with your doctor rather than just following the vaccination card they give you at the time of baby birth. Check the vial and ensure the vaccination date is not expired.

6. Do NOT indulge junk food for kids: Chips, burgers, french fries… None of them please. Get them used to homemade snacks like til ke laddoo, papad etc. Make them used to rice and wheat based foods, the whole day. Given them whole fruit instead of boxed juices. Make simple snacks with murmure or rice flakes. Stop Kellogg’s cereals right away!

7. Wash and peel fruits and vegetables very well before consumption, to be safe from eating pesticide-laden produce.

8. Closely monitor your baby’s milestones and keep an eye on anything that causes you a concern or if you feel is not alright.

9. Trust your mother’s instincts more than anything else. Nature gave you the power to sense if something is not going well with your child. Don’t run between different people’s judgement and opinions. You will understand your child by default. Just understand that you must look for the right solutions and at the right time.

There are two quotes that I loved hearing to and that gave me immense inspiration when I was completely withdrawn at a point of time.

1. A mother doesn’t choose her child, its the soul that chooses it’s mother. The soul completely believes that “this” mother will be my God in this life and she will love me unconditionally.

2. The special needs journey is not one I planned to take… But, I love my tour guide.

As I close this blog here, my heartfelt wishes to Aditya Tiwari, who on purpose, wanted to take the special needs journey and adopted a special child. This act is highly inspiring and this thought deserves a salute from humanity.