As a family life and child development expert, JP has devoted years in nurturing students and strengthening family relations.
It’s never simple to have a child with special needs. The child may go through physical, cognitive or even social and emotional struggles that hold them back from achieving their full potential. Behind these special children are their parents who willingly stay out of the limelight so they can focus on their children. However, they too, need attention and care. If you know such a parent, it’s about time to turn your attention on them. They deserve our recognition and admiration.
The Emotional Stress
During my undergraduate studies, I have the privilege to work with children with special needs. I came to experience firsthand how it was to connect these extraordinary individuals. But more importantly, I collaborated with their parents. Moreover, it is through these interactions that I discovered the struggles that they face each day. Consequently, it was an eye-opener to say the least and the experience was humbling. For example, one parent commented that being a parent of a special child is just like being any other parent -it was fulfilling. However, being a parent of a special child is like “parenting on steroids”. He flexed his muscles and smiled as he mimicked the Hulk. But behind the smiles and jovial attitude was an exhausted father. Beside him was his wife radiating an equal amount of positive demeanor. But like her husband, her eyes told a different story. Furthermore, the demands may appear greater and the stresses seem insurmountable but they soldiered on in spite of the challenges. Often, they get tired emotionally than physically. Another parent said that he can endure carrying his daughter the whole day and was willing to do this his whole life. However, it broke his heart to see her daughter stare at other kids running around and playing which she could never do. Parents that I spoke with agreed that the physical strain is easy to carry - any parent would. But the emotional demands are overwhelming. Another mother commented that the emotional burden can reduce even the strongest into dust. Everyone went silent, lowered their heads and a few begun to tear up. And the silence and tears were an unstated agreement to this truth.
Furthermore, I had the honor of meeting children in the cancer ward for children. We were having a birthday party for one of the patients. But when I perused through his records, his birthday was still 6 months away. The mom saw the confusion in my face so she walked towards me and calmly said that he had 2 months to live and he wanted a party for his 7th birthday. And without warning, my eyes welled up and tears started tracing my cheeks. The dad walked up to me and didn’t say anything. He wrapped his arm around my shoulders in a reassuring way. The irony is that this man was about to lose his child and yet, he is the one comforting me. How much courage do you need to witness your child slowly succumb to the inevitable? Six week later I went back to the cancer ward and it was my turn to stay silent and just hug the mother, the father and a sibling still oblivious of what was happening. Although they knew it was inevitable, it didn’t ease the pain. But how can you prepare yourself for something as devastating as losing a child? The mom told me that the children are the ones supposed to bury their parents not the other way around. At that moment I could not find any comforting response. As such, I just kept my mouth shut and simply listened as they poured out the pain they had.
The next time you meet a parent enduring this difficult circumstance, encourage, uplift or just be present. Any parent would trade a limb for their child’s well-being. Unfortunately, there are circumstances when no amount of limbs will suffice. It’s just fitting that we acknowledge their strength and resilience.
The Physical Demands
Having a new baby in the family is taxing. For example, the physical demands of waking up at odd hours then sleeping for a few hours if not minutes only to wake up again is exhausting. Also, a number of parents anticipate with delight the day their kids no longer need a nappy change or late night milk bottle. However, some parents endure sleepless nights just to tend to their child’s needs. Moreover, they are on call 24/7 for their children just like all parents should. But the difference is that they often have a limited time for rest.
In the parents waiting area of the SPED center, parents often chat, share information, do their nails and some enjoy a shut-eye. A few hours of their week, it was my task to look after their children. It was a welcomed break for them. Furthermore, recharging their energy is essential for all parents. Whether it is just a break for a cup of coffee, reading a few pages of a book or leveling up on a game on their phones will do wonders. Even though the reprieve was fleeting, it was their time for themselves. There is a certain uplifting and relaxing when you simply unshackle yourself from worries and frustrations even for just a while. Although the worries and frustration will persist after their personal time, the momentary break helped them recharge and refocus. Likewise, the ability to detach from these negative emotions help them regain control of their lives. Regardless of how momentary it may be, their personal time keeps them sane.
There was an unspoken rule in the lounge that when a parent dozes off, no one should disturb them. Except when it is the end of their child’s class, only life or death situations gives them the right to wake them up. Furthermore, other parents are kind enough to stay quiet to let the other parents get that elusive rest.
Whenever possible, we can help lighten their load by helping out with their daily chores, assisting them do their grocery, helping them fill up a prescription. The simplest actions can unload burdens and ease their difficulties.
Help Educate Others
One essential strategy to help families with special children is to educate. Furthermore, when we teach others about certain conditions, we reduce the stigma and discrimination. Unfortunately, there are still people who do not understand lest derogatory labeling continue to exist. Likewise, when people have skewed understanding they act inappropriately. There was a time when my family was in the food court of a local mall. Several tables away was a teenager with noticeable special needs and some adults. He was acting up and was getting loud thus people around started getting annoyed and some even called the mall guards to escort them out. My wife and I went to the table and assisted the parents overwhelmed by the undue attention. Moreover, we helped calm the child down and reassured to the guards that everything was under control. But still, we received heartless words like abnormal, dangerous, violent, retarded, from people all around. My daughter can’t believe how insensitive people can be. Unfortunately, ignorance may result in uttering statements without the benefit of intellect. Words devoid of compassion and understanding say more about the one dishing out the derogatory terms. And unfortunately, society harbors such individuals. Moreover, continued ignorance perpetuates this mindset. Without a doubt, educating people is important lest discrimination and rude behaviors continue.
Equip yourself with unerring information and facilitate the adaptation of the appropriate mindset. Also, if you are up for it, join advocacy groups and help disseminate accurate information and promote positive attitude. If we can help eradicate discrimination, we can live harmoniously.
It is not my intention to compare parents. Rather, I want to honor the unsung heroes who deserve our admiration. When we, as parents find it excruciating to get our kids to accomplish their homework I just wonder how it may be for a parent with a child diagnosed with ADHD. Or when we complain that our child is ungrateful for our efforts, it is presumably agonizing for a parent with severe autism to witness their child emotionally detached. When we panic whenever our child falls down and gets a scratch on the knee, how much more disheartening would it be for a parent to never witness their child walk, run or jump into their arms. Being a parent is never effortless whether your child has special needs or otherwise. But today, I encourage you to acknowledge the efforts of parents facing a wall of challenges just to provide quality of life for their special children. I like to think that children with special needs are truly special since they have extraordinary parents caring for them. They have special parents who require our respect and admiration.
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2021 JP Carlos