10 Common Things Parents With Special Needs Children Hear

Please hear us. Please hear us. Photo Credits: Jasmine Lee

I have been a Special Needs Mom for three years now. During this time, I have heard many comments and questions (often repeated ones) about my child’s condition. These often unsolicited responses came...

... from the mouth of strangers, friends and even family members. Some are well meaning ones, made out of a genuine concern for my child's well being. But most others are made out of ignorance and perhaps even a selfish need to fulfil a personal curiosity. The latter type of commentary and questions are in my opinon, unsolicited, unconstructive and unhelpful to parents like myself.

 

An Itch To Scratch?

Do we feel upset while attending to your curiosity? Yes and no. As much as we are okay to share about our child's unique needs, we do feel frustrated too especially when some of these questions force us to notice our child's lack rather than her progress. This, pulls us back into a state of inertia and "what ifs" rather than a more empowering mode to look forward and make the best out of it.

"you really don't have to remind me that my child is still very much a baby, not walking, not talking and still stuck in her pram!"  


Wrangling with The Big Ten

1. “What happened to your child?”
This is likely the most common question we hear from the people we meet. Hearing this over and over again is like hearing an old broken record on the player. In a typical like conversation, we may respond with some alien medical terms, and then attempt to explain them in simple terms for your benefit. The persistent enquirers usually do not stop at this question. Their thirst for more leads to one or ALL of the following type of questions, all of which seems to imply that somehow, I was the errant parent who caused my child to suffer. Though my blood may boil at this point, I usually keep my cool and put on a smile. But... "How I wish you will stop saying these...."

2. “Oh! You mean it was NOT detected during the prenatal visits?”
*slap-head moment* If we could, we probably would be keener than you to "detect" issues early on. But many of our children's unique medical conditions are hard to detect and even harder to diagnose. It is not uncommon that many suffer from conditions only found at birth but had to live with a vague diagnosis or even none at all for even years after. For most of us parents, the point of discovery was a shock. Nothing would have prepared us for this parenting journey. We find it even more difficult to answer "what- if" questions on what we will do if we had known this child will grow up with multiple challenges.  

3. “Must be that you had eaten something not right during your pregnancy, lah!”
Hmmm...the last I remembered, I have not knowingly ingested drugs or poison that can bring harm to my unborn child. But since you have triggered this thought process.....I started wondering... could it be the durians and coke combination or the few packs of instant noodles, or the sneaky few bites of juicy pineapples that I had during pregnancy? Sigh. That guilt comes in staggering, sudden bouts to haunt me whenever I encounter such a question. Dear child, mommy is so sorry that my womb has not provided enough nutrients and oxygen for your normal growth!

"in what way can such a comment help me to cope and move on?"

4. “Did you do 'something' when you were carrying the baby in the womb?”
The taboos? Let's do a checklist...hmmmmm.
Did I sew anything on our marital bed? Nope.
Did I shift any furniture during pregnancy? Nope.
Did we do any renovation works in the house when I was pregnant? Nope.
Did we visit the zoo with baby in the womb? Nope.
Did I watch any horror flicks ? Not that I can recall. Nope!

5. “So poor thing.”, “It must have been tough on you.”
In spite of the roller coaster ride in our lives, I am sure many parents with differently abled children will agree that:

We are more easily contented because we have learnt to celebrate even the smallest of progress in our children and in our lives. My child may never be able to attain the so called milestones, but for every little thing she can do, we celebrate that!

We feel richer in many ways. To us happiness is being contented and giving thanks for whatever we have.

We are proud of and respect our children for their resilience. My little  warrior has already touched many hearts with her bravery and strong will to live.

So to comments like no.5 , my usual response is , “Not poor lah! Just that my girl may have gone through much more pain than any other children at her age.”

6. “Will your child ever get well in future?”
We do not know. Neither do the doctors. This is a multi-million dollar question, especially for children with rare disorders or unknown diagnosis because each case is uniquely different.
Although we do pray for miracles that our children will one day be completely healed and lead as normal a life as can be, our greater wish for them is that they stay infection free, be healthy and happy. That, to us, is more important.

" Do not feel tempted to suggest that my child will outgrow and be normal unless you can predict that with accuracy. Even professional doctors do not know when and how things can be. "

7. “Mommy, look! Why does that child look so weird?
Awkward situation right, parents? Do not panic. If you are the parent with the "normal" child who asked this, take the opportunity to inculcate awareness and empathy in your child by explaining that sometimes people look different or behave differently because of a medical condition or disability. Guide them to understand that the differences are not something to be afraid of, or condemn. The response that is most offensive and unconstructive is to pull the curious child away, look at the parent and child with special needs strangely, and start mumbling away as if they are contagious. Although it is tedious for us, but we really would rather you ask what you need to know to factually answer your child's questions.

If you are the parent with the child with special needs, start by explaining that your little one is sick and need some special support eg. a trachea to help her breathe, a wheelchair to move around, a special feeding tube in the nose or tummy to feed safely and grow. Be friendly and smile, be patient and explain factually in simple terms so people can understand. We need to model for the other child and parent how to respond to our special child. It takes two to start a meaningful conversation that can help everyone better support the special needs parenting journey. Educating the young about differences in the society should start early. This helps children grow up with a more inclusive mindset.

8. “So old already still sitting in a pram?”, “Are you sure this is a wheelchair?”
I do not wish to confine my child in her chair.

My greatest hope is that she is mobile and able to move around, even if it means that her gait is not steady. She has almost no control of her trunk muscles hence she is floppy and unable to stand or sit up on her own. 

This question usually comes from the drivers when we try to take public buses. For special buggies or what probably seemed like a giant sized stroller, there is a “WC19” yellow label hanging at the side. This label is there to inform the public that the buggy has been crash tested and is safe to be used on moving vehicles. Most bus drivers are kind and will apologize for asking such a question and help us to push the child up the ramp.

Presently, I believe that the bus companies are trying their best to educate their drivers on all the different types of wheelchairs (not just for the adults) that are being used in Singapore. We look forward to better progress in this.

9. “Have you brought your child to see specialist X Y Z?”
Trust me. We would go to almost every doctor (even the so called best ones in the country) or alternative therapists to try to "fix" her and make her normal if there is a cure. We are still open to hear what you may want to suggest though there is a high chance we would have already done the consultation before and examined that route.

10. “You need to do more good deeds so that your child can recover.”, “It must have been your retribution!”
Erm, seriously? This is really the ultimate! How should I react upon hearing such nonsensical comments from strangers, or even from our own family members? I feel extremely disturbed and upset when people “accused” me of "causing" my girl to be in such a state. If good deeds could heal my child, I will definitely do more! But even if it does not, shouldn't we all strive to do some good each day as part of our lives without any hidden agenda?

Thank you for Access and Empathy, not Pity.

Most parents of individuals with special needs are happy to share their story with you. But, be nice when asking. Do not come across as an interrogator. Do not put on a "know it all" demeanor, pretending to understand something you possibly could never really do. Like any other face-to-face communication, our body language determines the tone and the words that are being exchanged.

We thank those who acknowledge our presence and accept us gracefully when we are out in the public.

We appreciate the kind words told to encourage us in our special parenting journey.

With or without our special children, we are parents and people first, with feelings, hopes and dreams, joys and sorrow, like anyone else. As for our children? They are always people first, before their differences.

 

Jasmine Lee

Jasmine strongly feels that no parent should be left alone to ponder and wonder how life will be for them upon knowing that their kid is going to grow up differently, being special.   

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1 comment

  • Mary

    Mary - Thursday, 28 January 2016

    The best thing a stranger said to me was "I will pray for you/your family." I think that is most comforting to hear.

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Question of the Month

  • Q: What are the various compressive suits available and in what way do they help a child with special needs?

    A: There are various compressive suits available worldwide, just do a google search on compressive suits for therapy and a long list will appear. Each suit has different properties, is made of different materials and claims to have certain benefits. For example: compressive suits for children with autism are supposed to improve sensory input. Compressive suits have also been used for children with poor balance and proprioception (knowing where your limbs are in space). However, not all suits are suitable for all children. Compressive suits can cause increased difficulty in breathing, worsen scoliosis or hip dysplasia if not fitted properly.

    Please consult your therapist for an assessment before use.


    Janell Lee
    Paediatric Physiotherapist

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Credit: A video by Channel 5

Credit: A video by Trixie Chua & Celine Kim for Special Seeds Singapore.

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