Parents of people with disabilities are no different than, and yet are completely different than, every other parent. Some of them may take the news of their child’s diagnosis with strength and determination, while others will forever mourn the perceived loss of control and the things that they will never be able to change about their child. As it turns out, this says nothing about the child, but speaks to us as individuals at the time of confronting unexpected challenges in life.
Pitifully, society is ready to judge without having so much as a clue about much of anything when it comes to children with disabilities and the parents who raise them. You may be easily labeled as a bad or indifferent parent if you treat your child like every other kid. The world out there expects you to be more patient than others, to smile more frequently than most, and to thank them for their uncomfortable smiles in your presence.
They expect us to be understanding as we tirelessly repeat over and over again that the word “retarded” is offensive, and once again we hear back the same phrase: “But is not about your child, is just something that I’m used to saying,” and then the same person smiles half-heartedly at your child. He likes him, but not enough to respect him over his own skewed beliefs that are based on nothing real.
They expect us to not take things personally when they make comments about our kids’ rights and needs. They expect us to smile and not to say a word when they are debating the cost of abortion versus health services for people with disabilities. And we’d best not get mad at them because you will be branded as aggressive, confrontational, and defensive of your child. They don’t have a child with special needs, but they are citizens of this country, so they have the right to discuss your life as if it was a government-funded street repair up for debate.
Many times, doctors, therapists, and specialists inquire about why your child is not involved in more sports or why is he not attending community activities. Yes, in theory it seems wonderful to be included in those things but from your perspective, having a child with medical challenges is tough sometimes. Parents may spend weeks without sleep, have extra expenses and challenges that even with a doctorate, you may not understand if you don’t live in it every day. Sometimes, it’s literally impossible to leave the house to participate in those activities that sound so great. I’m not complaining, I love the whole deal, but really, I don’t need more pressure put on me. I’m not a bad parent, I’m just tired and my kids need me more than they need to participate in little league.
Having a child with special needs doesn’t give you super powers or additional hours on the clock. You are still the same person, trying to use your time and hope wisely. Yes, we may be outstanding sometimes, but most of time we have no choice, we are doing it for the love of our children.
Neither your sorrow nor your judgment helps.
What should you expect from a parent of a child with special needs? Nothing special and nothing different than any other parent. Expect to meet another devoted parent, fighting hard to make the best of life with his or her family.
We are neither saint nor angel, we feel just like everybody else with some extra special challenges. We never get over the call to protect our kids from injustice. We never get used to being offended by someone who just doesn’t know better. We have the same needs and feelings as every other parent, and just like them, we make mistakes all the time.
We have personal needs and the motivation to pursue our personal dreams in order to feel independent joy and to feel alive and feel realized as human beings. We don’t give up on happiness, we just learn new ways to achieve it, adjusting our expectations of what happiness really is.
Friendship is welcome. Help is welcome. Love, acceptance, and the sincere desire to change old beliefs to learn about new realities is extremely welcome. True love, respect, and a genuine smile are always welcome. Because you’ll get all that, and more, in return from a parent of a child with special needs.
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