If I even for a second sit and think about my day to day working as a Head at the school of special children, it would be debatable to say if its all easy. I if not all day but everyday feel overwhelmed by emotions of anger, sadness and a definite zest to do something for the lovely children. Anger towards the people who do not wish to understand what goes on in the world of these children and their small desire to be a part of the society and not otherwise. Sadness for unreached goal of the people trying to make a difference in the lives of these children but are blocked and looked down upon by a certain percentage of the society. I could still somewhere hold my outburst of emotions about what the ignorant part of the world thinks or reacts towards the special children but I cannot let my feelings slide for the parents of these children. The parents undoubtedly have greater challenges to overcome than one can pen down and beyond.
It’s easy to say that God never gives you more than you can handle. We try and tell the parents that God chose you because He feels you are the blessed one or have the strength to take care of a special kid. Some of this might be true, depending on how much you’ve put up with. Did anyone turn up to help you? Did you get enough sleep? And then of course you love your kid, but there is this huge cloud that just rains on you all the time!
Parenting is already an exhausting endeavour; raising a child with various physical, developmental or emotional challenges can be a Herculean task. Faced with unexpected challenges and emotions it’s a journey to tread on. Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don’t know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
The birth of a baby brings lots of emotion — most would assume emotions of happiness, excitement, amazement and joy. But when your baby is born with a physical or mental disability — emotions often turn to shock, sadness, anger, bewilderment or anxiety. What do you do with this swell of emotion? It’s easy said than done to work through the pain and sorrow and rediscovering joy. Your baby is alive and you truly are thankful. Still, there are things that have died: dreams, expectations, hopes, wishes. Allow yourself to grieve. There will be shock, denial, anger, bargaining with God, depression, acceptance. The question of “Why God?” will haunt you. Go ahead; wrestle with that question. At some point you will need to rephrase your question from “Why?” to “What do You want me to do now?”
Focus on what is, rather not on what is not. Is the glass half empty … or half full? The truth is it’s both. Recognize and admit the “half empty” part. Yes, your newborn may never get to ______ (finish the sentence as applicable). You must also purposefully choose to focus on what your child can do and what are the attainable goals and dreams for this new family member. This is the “half full” part.
Take one day at a time…literally. This is not a cliché; it’s a healthy way of life. Two important forces shall be active: The actual life of your child will help you deal with the losses because he or she will capture your heart and pull you into life in healing ways and the busyness of being the parent of a special needs child will demand more of your time and energy making it harder to take the personal time to grieve. There may be days where you feel all alone in your struggle. From my own experience and talking to the parents I know that parents tend to be left out and forgotten. And unfortunately the “feelings of crisis” or “grief” keeps coming back. Parent Group Therapy is a great help here as it gives the parents an opportunity to seek encouragement from those who have trekked on a similar road.
Each day is a new day when we can see tiny achievements accomplished. Let’s make it our aim to make these children happy. Be patient with your child, yourself, your spouse and the process, and you may find yourself laughing and enjoying life more than you ever remembered.
Another challenge faced by these parents is the dilemma of raising a normal sibling along with a special one. You try to love your children equally, but you can’t possibly provide for them all in the same way. Some children simply need more of your time, energy and resources. Still, it’s important to help your other children feel you love them as much as the ones who need you more. You need to be as fair as possible.
If I could change one thing about the society it would be our non-acceptance of these children. I would like to confess that sometimes I start doubting as to “who is more disabled…these kids or we?” who are unable to adjust with them. They are superb human beings who respond with warmth and love. If given the opportunity and exposure they are quick learners too. Good exposure helps them uptake the simple miracles of life and encourages them to feel as normal as others. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without working for them. Kudos to you parents! No one dreams of one day parenting a child who needs you to feed him, diaper him, speak for him, advocate for him, play with him, soothe him, cry for him.
Despite the prevalence of Chicken Soup stories and television specials, parenting a child with special needs is not a particularly rosy experience. It not a lifetime movie, or a very special episode of an otherwise humorous show, it’s a whole-life commitment, and generally no one really asks you if you’re interested before you sign up. Believe that you can constantly improve your child’s functioning—and you will discover ways to improve it. AND IT WILL IMPROVE. Good Luck and Happy Parenting!