As a parent of a special child, there are various challenges at different points of time. But the most challenging aspect on daily basis that I struggle with Shlok is handling his difficult behaviors. Most of the times, he is happy and manageable. But there is perhaps an instance or two on daily basis when he turns defiant and difficult for short while say for 15-20 minutes…
Most folks would think-‘kids are kids’ and by the very nature they are bound to exhibit difficult behavior at times. At times Shlok turns defiant and mischievous like any other growing kid; but perhaps the degree and frequency of his misbehavior tends to be more. But the most remarkable attribute of his nature is he does NOT hold anything against anyone and always be kind and sensitive to everyone’s pain around him. I am listing some of the situations/areas where we have a recurring history and he will continue to exhibit in the foreseeable future until we address it in cohesive manner to fade out eventually. Some of these traits may or may not be common to other developmental disabilities.
Wandering or sneak away in crowded places
Spitting to show his resistance to a situation
In case of disagreement, sometimes he would turn physically and verbally aggressive.
Mood swings
Compulsive behaviors to hold car keys or sit in any vehicle of known or unknown individual, wearing wrist-watch even though it is not allowed in his school etc.
A child with a Trisomy 21 diagnosis -- Down syndrome -- often has a variety of health issues that may lead to behavioral problems. As the research by the University of Maryland Medical Center suggested, we have to give due consideration to -
Developmental vs. Chronological age – In Shlok’s case, chronologically he is 10 but having a developmental quotient (DQ) of about 65, his mental developments appears to be around 6-7 years.
Common behavioral issues of a Down’s syndrome child such as a short attention span, impulsive behavior, slow learning and poor judgment
Communication and Learning - Children with Down syndrome may exhibit speech and language delays. Sometimes such kids may display temper tantrums as they get older, often arising from anger and frustration with difficulty in communicating.
Over the period, I have realized that as parents of special children, we tend to be more instructive, protective and many a times stressed out while dealing with our kids. Child’s bad behavior is an indication that perhaps we first need to introspect on our own mindset and whether we are approaching child’s upbringing in constructive yet fun manner. To me a parent’s role could be perceived as -
Patiently – This is most important quality. Normally mothers are more patient.
Assure – There will lot of situations where kids will doubt themselves. So we must dispel the doubts and try to assure our kids along the way.
Revitalize – I am suggesting revitalize instead of rehabilitate since that kind of positivity is required whether your child is special or normal.
Envision- We must envision a better tomorrow for our kids and we must genuinely believe into it. (Recently watched a documentary film on Netflix “Crip Camp: A Disability Revolution” focuses on campers who turned themselves into activists for the disability rights movement and fought for accessibility legislation in USA)
Nurture – As the dictionary meaning goes, we need to take care of, protect and develop.
Train – Being a special individual, there are many obstacles even in routine activities that everyone else takes granted for. So we need to identify and train our kids so as to be prepared to face the challenges of tomorrow.
Out of all these things we have intentions to address all but the first aspect which is patience. Mind you, only patience would not suffice as many a time parents of special children feel helpless and victimized. In Sanskrit there is precise word for it – Titiksha. The closest we can get to Titiksha is Endurance. If we take care of patience then everything else should fall in place eventually!
Over the period, I have developed a thumb rule for myself – 10-20-30!!! In every situation I will offer 10 seconds of patience to my child for every minor misbehavior; 20 minutes once in a day for recurring defiant behavior and 30 days to observe a deeply rooted bad habit. The whole point is we should have a better understanding and accordingly maneuver our path through the woods in focused yet fun manner. Now this is what seems to be working for me. There could be other variations that others may want to try out whether it is 10-10-10 or 20-20-20 or so on or so forth… I would love to hear out what works for you. I can be reached at shlok.ability@gmail.com
