This is a topic of conversation that is on the minds of many parents with special needs children, friends do evoke the thought from time to time, with their question, “What are your plans for Niam’s future?”, with only two solutions available, a group home, or sibling care, my choice being the latter, which usually results in a question but more of a statement “Is that really fair?”
I have brought up my family to instill the importance of charity work, to care for others, emphasizing humanitarian work. I try to be an example, not just preach it. With that in mind, I ask those same friends, do your children participate in any volunteer work, help others in their community, or is it encouraged just get into a coveted university program or for job experience? I teach my children volunteering, helping others, should be second nature, it is something you inherently do, not something you think about doing for a potential gain.
As the conversation usually leads to “He has his own life to live”, a blanket statement, that at times I simply do not agree with, what is life, if we cannot help our own siblings. Niam’s presence, his unconditional love and, the opportunity to be a “selfless” person, is a privilege, not a burden in my elder son’s life.
Will it be hard? Possibly, but who can tell me life is not hard and, can we say for sure it will be hard? On the more positive front maybe it is a blessing. I think Rohan is lucky to have a brother who is as loving as Niam, they share a special bond, and what is beautiful is Rohan himself says he wants to look after his brother. To me I don’t see this a job as a full time caregiver, but someone who will ensure he has proper therapists with him, teaching him, being his Art Manager, providing him a loving home where he is loved and accepted. If we can love more than ourselves, look further beyond our wants and needs, we can create a way to make any situation work and see the positive.
For all the pessimists out there, I don’t plan on leaving this Earth anytime soon, Rohan will have an opportunity to go through all the phases of life, and experience them to the fullest, he will include Niam where he can, foster a relationship, include him in his life, so when the day comes it is an easy transition, one that is seamless and the right thing to do.
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