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2013.05.01 Wed

To Grow With The Child Who May Have Developmental Disabilities #2

By Akizuki Nanami

Thursday, October 4, 2012

We sometimes hear that “disability is a personality.” It sounds good in words, but when I hear people who have no first-hand experience ever in this matter say this, I want to tell them, “It’s not so simple.” The bottom line is that the word, “disability,” insinuate some kind of “handicap” although we know it’s not referring to the “human being” itself, but rather to the situation. If there’s no such thing as sight correction lenses, the nearsighted people will have difficulties in daily life (I will, at least). With the use of eye-glasses and contact lenses, I can lead a “normal” life. Without them, it will be a “disability.” My face wearing glasses is a “characteristic of how I look,” but if someone says, “having bad eye-sight is your characteristic,” I would want something done about that. The important thing is, it is up to the society to turn disability into a personal trait.

Putting this aside for now, let me raise a question of “when” the parents doubt about their child having a developmental disorder. In my case, it was immediately after birth. I thought this child is “somewhat different from other children.” I didn’t have any previous parenting experience, but the intuition that “something is strange”could not be suppressed. The newborn baby sleptwell and peacefully, and aside from having its diapers changed and breastfed, the baby didn’t require any other attention.

“There’s something different about my child. He’s not fussy and I feel there’s no eye contact,” I consulted with the people around me, but my mother-in-law simply told me, “You should be thankful that your baby doesn’t require so much attention.” On the other hand, my own mother said, “You are making a big deal because you get too much information from the Internet.” Actually, she was right because the Internet didn’t really help me much. When I searched for the words, “developmental disorder” or “autism”, I hit some consultation websites to send in questions to find out whether your child has autism or not. And in most cases, the responses were, “There is no problem.” “You worry too much.” “There were kids in the neighborhood with similar characteristics.” “Our baby was also the same, but he turned out to be a normal child.” These replies that showed very little empathy gave me a sense of discomfort more than reassurance.

If it was me, I can never tell someone that the child is “all right” without actually seeing the child. I wonder what kind of mentality these people had to say such irresponsible things like, “you worry too much” and “you need to reassure them.” Wouldn’t you tell a friend, who is worried about the possibility of having a cancer because they have certain symptom, to go to the hospital and get a check-up? What if you said, “Don’t worry. I know of someone who had the same symptom and it wasn’t cancer.” and then to find out later it was actually a cancer? Can you take the responsibility for your words? In my opinion, the right words for you to say are, “If you’re worried, then go to the health center or the medical institution and get a professional consultation.” No one wants to play the role of telling the truth that will shock a friend, but I believe the true kindness is to help a friend face the truth gently in one way or another.

A person at the developmental disabilities support center said, “Your child is still very young and I’m not a doctor and I cannot say anything definite, but from what I can see, he seems to be all right.” These were just words of comfort, but to hear such comforting words can be a consolation at the time of devastation. It certainly is different from saying comforting words to evade facing the truth. I think the latter case will only produce unfavorable results andirresponsibleself-satisfaction on the part of the consultant. Don’t get me wrong because I do understand that it comes from good intentions, of course, but….

Eventually my child and I were able to have eye contacts, and even when he began to point at things much later than other children of same age, the concern of developmental disabilities had always been there in my thoughts. In autism, there is a type that is referred to as Regressive Autism or Late Onset Autism which the child’s development suddenly “regresses.” To be honest, while raising my son since he was a tiny little thing, I never thought of him really cute from the bottom of my heart until recently. The worries of “what will happen to him?” always remained tucked in the corner of my mind. When I think back now, I feel quite disappointed that I wasn’t able to enjoy parenting more at that time.

My mother who saw me hesitating to move forward told me, “You have to raise your child no matter what!” It astounded me because it wasn’t that I didn’t want to raise a child with disabilities. I was merely concerned about my child’s future. What if he is unable to discover the wonderful world of books because of the disability to read due to LD? I was just thinking of all the hardships my child will encounter in the future. I cannot say that he will be miserable because of his disabilities, but if at all possible, I don’t want him to experience hardship and I want to help him heighten his potential. Isn’t that what parental love is all about?

Original Article in WAN Website

Adapted by M. Doioka

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