Welcome back! This week, we will continue to look into the topic of Cri du chat syndrome and one mother's journey of caring for her child with the rare genetic disorder (and all the fun that it implies). Last week we left off by recounting some of the advice that was given to her by professionals, boiling down to having her leave her son at a feeding clinic isolated by his family (save for whatever time she would be able to go see him, which in her case would be none because of her busy schedule), the ever popular option of institutionalizing him, and the one good idea: reaching out to other parents who are in similar situations. Now let’s see where this parenting adventure will take her next.
Notice how I seem to depict all out adventures either on a boat cruise or under the water? Never on any actual land mass. Except for that one time with the fair and travelling to Britain and Scotland, but they don’t count as they are an island surrounded by water.
On top of everything else that she has experienced thus far, there was yet another realization that became quite clear to her: Raising a child on the spectrum (not to mention one with an extremely rare genetic disorder) was a lot different from raising a normal child. This was made extremely apparent to the author, as she has both a child who has all of the above, and some who do not. The author has, as they say, lived experience. Much like I have lived experience of accidentally putting my hand to close to a candle for a couple of seconds, but long enough so that the hairs start to burn. Lived (painfully) experience.
Concerning the parenting of her other children, she has a number of sources she could draw on, most of which, from what I understand, without much if any help from institutions. Sources like: generations of parenting knowledge, her own childhood experiences, observed other families parent/child dynamics, and parenting advice from conversations, magazines, newspapers, fictional books/movies/T.V shows. In other words, society, much like all other aspects of our lives that it touches, taught her, in large part of in whole, of how to raise her normal children.
But how many television shows, movies and/or books do you know of that teaches parents how to raise a child that is on the spectrum? (or at least those that give positive advice on such matters). Do you know of any family with generations of knowledge on how to parent a child on the spectrum? Have you ever heard it discussed? Probably not, or rarely if so. Society, it seems to me, does not seem to know what to do with such a child even if it dropped from the sky and started to do a jig. Except, of course, for the parents who are themselves on the spectrum, from which they might be able to benefit from their own childhood experiences at least.
Childhood can teach us many things. How to raise our own kids, what bugs are safe to eat raw, why attacking a nest of red ants can hurt a lot, and most importantly, how to try and not get in trouble.
Will, that does it for this week's post. Next week will be the last post on this subject, and the last stop on this particular tour of the Autistic/Aspie Atoll. Please leave in an orderly line as we drop you off onto your own island. Also, do not forget any valuables/items you bought with you on the trip, otherwise we will keep all items in a lost and found box/sell them on the black market for top dollar. Whichever comes first (hurry, they go fast). Until next time, this continues to be, the Audacious Aspie.