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10 Simple Things To Pay Attention To In The Company Of A Special Needs Parent


Special Needs parent

Photo by Priscilla Du Preez on Unsplash

It seems like only the other day when I would wonder about a special needs parent and wonder what to say to her/him?  Should I reach out and say something? Stay away? Should I acknowledge that  I see their struggle? Or perhaps like there is no difference in the way the special needs child interacts with the world? Or maybe act like I couldn’t see the struggle?

With all the dithering and wavering, the ratio of my reaching out to a special needs parent and looking the other way must be something like 1:5, if we want to be charitable.

As someone with a minimal exposure to special needs families, the only familiar reaction after learning about a special needs child was saying, “Aiyoo, paavam!”

And then doing nothing.

Our strong instincts to avoid saying or doing anything manifests out of a deep need to not embarrass the special needs parents or ourselves.  

To do no harm.

Of course, this only ends up successfully isolating the child and their family in the long run. The fact that we rarely see the differently-abled actively engage with life around us leaves us with the luxury of not giving it another thought. 

However, this is as far from reality as possible. India has 50 million differently-abled children/at-risk for a developmental disability.  Our lack of thinking about them means that their voices are missing in the mainstream and they continue to not access facilities and opportunities that might help them excel.  

I often find myself musing over a thought that slays, “ If Stephen Hawking hadn’t finished his education before his condition was deteriorated, would we have benefited from his scientific work?

Which naturally leads to:

How many of our citizens, for lack of access to opportunities, languish without a voice?

Bridging these different worlds is a necessity and so, where do we begin? Here are 10 guidelines that I put together from my own experience of raising a special needs child. Of course, these are by no means prescriptive, however, I do think ruminating over these pointers will equip us with better responses around a special needs parent.

1.Pay attention to the terminology used around a special needs child

Many of us have grown up with words like ‘mentally retarded’ or ‘mad’.  Even terms like ‘intellectually challenged’ put the focus on a person’s difficulties.  The movement for inclusion has brought forth voices of the differently abled, many of whom say that they wouldn’t change their brain wiring if they could( that should really tell us something), that the same differences that put them at odds with the world also confer them with tremendous, unique strengths.

The terms to use are from the ‘ableism’ movement, one that presumes competence and works to accentuate the strengths of those who are differently abled.  

Do note the focus on the ‘ability’.

 

Also Read: My Special Needs Son Flourished When I Got Out Of His Way And Here’s My Story

 

The use of the word ‘normal’ can rankle.  Normal is a math concept that talks about what is characteristic in specific populations.  For example, in a survey of all adoptive families, adoption is ‘normal’. In the larger population, adoptive families are probably some 1% of the total, making them not ‘normal’.  When we use technical terms in everyday language, we give these words connotations that aren’t favorable. Using these words doesn’t put us or the ones we compare in good light.

Typical’ is better to use than ‘normal’.  

Naming the difference is another way to go – a ‘child on the autism spectrum’ puts the child front and center.  ‘ADHD child’ isn’t a great term to use.  Every condition has these terminology differences, so looking it up is a good idea(especially around special needs children.)

2. Put ourselves in ‘their’ shoes

 If we were to put ourselves in their shoes, we can imagine that this could have happened to us quite easily.  And then one realizes that there is no ‘us’ and ‘them’, just one collective ‘us’ for whom we all need to do better.

3. Look for the similarities in our situations

Parenting is a commonality, even if children’s abilities are different.  

Our love for our kids is a constant. Our hopes and fears for them exist. 

4. Reach out to the special needs parent

In my experience of working with parents whose children are differently wired, they are acutely sensitive to their children’s needs.  The fact that others might be inconvenienced by their children’s actions is also something they are sensitive to. Many of them isolate themselves – partly because their children find it difficult with sensory needs, et al and partly because it gets uncomfortable to deal with people staring at their child.

We can reach out to the parent and tell them just this: that we would love to help, love to include the child and ask for guidance on what would help.  A parent to whom I offered to babysit their child so that the parents could go away for a meal on their own, was in tears at the offer. She never took it up but the fact that someone reached out made her feel less alone.

Our intentions shine through, even if we don’t know which exact word to use. These are our kids too: we are their village like others are our kids’ village.

5. Talk to your children about special needs and differences on an ongoing basis

Diversity is the norm, much as it looks missing in our middle-class, do-everything-alike worlds.  Isn’t it funny that wearing the same outfit as another to a party embarrasses us just as much as standing out ‘too’ much in a crowd?  Our children need to know that there are all kinds of people in the world and that living in it to the full sense of the word is their right, just like it is ours.  That one doesn’t become superior because they were privileged to be born typical, that they don’t have difficulties that hinder their growth.

These differences range from autism, ADHD, cognitive differences to learning difficulties, medical conditions and physical differences.  They could be economic in nature or in families influenced by adoption, divorce, single parenting or same-sex relationships. No child is ‘too young’ to be told age appropriately that all kinds of things exist in the world.  That this is okay.

Why should a child know if they are themselves not personally impacted by it?  

Precisely to bridge and include all kinds of children in their worlds.  To not discriminate against others – values we would like applied to ourselves if we were on that end.

6. Go the extra mile, if required

Sometimes, inviting a child with differences to a birthday party might mean designating a quiet space for all kids where anyone who is overwhelmed can calm their senses down.  Sometimes, it might mean having less sugar (not that THAT is a bad thing for all kids!). At other times, it could mean being open to a child bringing their own food to the party, understanding that the fact that they are included means the world to them.

 Reaching out to the parent on what would make the child most comfortable is a good idea. Once we do a few of these birthday parties, it becomes clear that there are as many ‘neurotypical’ kids who will benefit from these measures as those who are differently abled.As a parent who hosted birthday parties for 5-year-olds and 6-year-olds, I remember needing silence and being left alone for an hour after! 😀

Play dates, common outings, dinner gatherings…there is really no reason that kids with a difference can’t enjoy life like others.

Also Read:How To Ensure A Playdate For Kids With Autism Does Not Feel Like Walking On Eggshells

7. Know that inclusive schools help ALL children

A huge complaint that schools provide to parents of the differently abled is ‘what will other parents say?’  The first complaint against this child is blown up in ways we would hate to have done for any child. Inclusive education is a child’s right and by ‘child’, I mean all kinds of children.  Research has shown that neurotypical children in inclusive classrooms perform better academically. It could be because teaching methods have had to evolve to include the child with different learning needs, ending up benefiting all kinds of children

8. Avoid stories, especially negative ones of children with similar difficulties that you have seen

Parents of children with different needs have usually done more research and met more professionals in a year than most others would in a lifetime.  While some parents are only worrying about their child adjusting to preschool, these parents need to plan for a scenario where their child is independent in the world after their lifetime.  If we can’t help, the least we can do is be sensitive to what we tell them.

9. Minimizing a condition does not mean giving support

 Children have difficulties, sometimes serious enough to hinder their routine functioning.  Many parents of children with ADHD are judged, held responsible for behavior that comes from brain wiring and are told that their children are spoiled, worse (from Whatsapp forwards!) that ADHD doesn’t exist.  Screen time isn’t responsible for a child’s wiring from birth. If that were true, removing screen time could reverse the plastic brain as well, right? If only denial were to ‘cure’ conditions: most parents have tried that already!

10. Saying “This is all new stuff, XYZ condition didn’t exist in the past” does not help

 Data from the past is problematic – its availability and quality.  In India, we have an issue with current day data – we are never sure of how many people are differently abled or their current status.  So in all probability, conditions existed and were not reported. In many cases, the criteria for diagnosis have changed, meaning as we know more, we can diagnose more.

A diagnosis serves a very specific purpose – to figure out how to support the child to the best of our abilities.  There is a lot we do not know and we try regardless. A diagnosis does not define the child’s life and only one benchmark to start off from, not a label.  Even if the condition didn’t exist before, it does for this parent, this child, now. Its existence before or after in another situation is irrelevant to this parent and this child.  Mentioning this doesn’t help, right along with unsolicited advice.

In special ed circles, there are two rules of thumb:  

  1. What helps ‘our’ kids helps all kids
  2.  If it hasn’t worked, we haven’t done enough.

 After some years in the world, these sayings seem to apply universally!

Also Read: On the Struggles of Being a Special Needs Parent: Author Maureen Walsh Lake

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