I have been a special needs parent for just under two years now – officially, that is. During this time, I have realized that not many of our friends or family truly understand what we go through on a daily and weekly basis! Let me list a few challenges that I think the people around us need to be aware of.
Schools
Kids asked to leave the school because they are not able to settle down and listen to the teacher. Kids being punished unnecessarily because the caregivers don’t understand their condition. Parents being promised the world so that they enroll their children only to get a raw deal. And so much more that I dare not add at the moment…
Dietary challenges
Some kids need to be on special diets that may not be readily available or are super expensive. Other kids have allergies and reactions to certain food items as a result of their condition. This diet thing is one of the hardest things for a special needs parent to adapt to – it takes lots of commitment and money.
Therapy costs
I can almost hear you say, but therapy at government hospitals is subsidized so that everyone can afford it. Well, even if one is going for therapy at a government institution that is highly subsidized, there is the cost of transport, snacks, etc., not forgetting that therapy is not a once in a month thing – some kids need it up to four times a week!
Family issues
Where did such a child come from? Which side of the family? Were you cursed during your pregnancy? Did you fulfill all the traditional rituals you need to before you had children? What sad statements those are! Sadly, many people are not willing to accept special needs kids and their parents into their families. Parents end up being ostracized or left out and being blamed for their child’s condition.
Societal issues
The stares, whispers, looks, etc. can make even the strongest mom or dad melt into tears. For example, there are kids who get over-excited when they go to new places. Others start crying when in unfamiliar surroundings or when their routines are disrupted. The result is more often than not a meltdown that is bound to draw attention from everyone around, hence the judgmental stares, disapproving looks, and snide remarks.
Church
You go to a church hoping to have a moment to be with other people and worship God. Unfortunately, it is that one day that your kid decides to makes noise or run around during service chasing an imaginary butterfly. You are kindly asked to keep him quiet, take him outside to play or confine yourself to the Sunday school – in other words, get out because you are a nuisance. How sad. And yes, this has happened to many special needs parents.
Exploitation
There are many fake therapists out there who will claim to do wonders for our children. Before the parents realize this they have been milked dry and are back to square one – no money, and the child has made little or no progress. How I wish that therapists who fall into this category would step back and think about the damage they are doing to the children and their parents.
Education
Society does not know much about special needs, and as such, special needs parents are having to constantly speak, educate, and inform the people around. It can get tiring and draining for the parent who has to take care of a child who has additional needs. Also, not everybody is willing to listen to the explanation given.
Bolting and disappearances
In the recent past, I have realized how easy it is for my child to disappear. He will wander off and not hear when I call him because he is in his own world. Did you know that special needs kids disappear in a split second, and find it very hard to find their way back? Can you imagine a lost kid who can’t talk, or has a meltdown after he or she notices that the caregiver is no longer in sight?
Fear of the future
What will happen to my kid when I am no longer there, especially if he or she is not independent? Who will take care of my child? What can I do now so that my child is ready for the future? Will my child live with me for the rest of his life? Those are the questions that haunt many special needs parents.
Friends, now that you know what special needs parents go through, can you spare a kind thought, a prayer or a word of encouragement next time you meet one? One little action carried out with love and understanding will go a long, long way!