Why the Internet and Email Can Minister to Parents of Autistic Children
Mini Rant by Carrie Fancett Pagels, Ph.D.
The "doctor" is in today! Carrie gets up on her psychologist's and parent's perch.
Just read an announcement in our local paper for a two month course for parents of children with autism. FREE. Great, right? Maybe. I read on. This course was reported by parents WHO HAD ATTENDED it in another locale to have been extremely helpful to them. (Translation - Those who managed to get to the meeting to actually finish the course, which could have been - how many???)
Here is how I KNEW this was planned by someone who has NO CLUE what parents of autistic children deal with every night:
1) It is planned in the early evening (SO, the parents will do any homework they have and get to any doctor’s appointments they have prior to that time. AND they will have put a meal on the table and fed their kids and gathered them up to go.) OOPSIES – hmm, some could stay home with the other parent but YIKES the other parent has divorced the caretaking parent (high rate of divorce among parents of autistic children as Dr. Doom once explained to me in an almost cheerful voice.) Let us assume there was no divorce. Depending upon the age of the child, and severity of the condition, if the caregiving parent leaves the autistic child might become quite agitated and engage in activities that range from mildly annoying to severely destructive.
2) On a school weeknight, not that weekend would be any better, but IF the children are coming THEN you have a commute to and from the meeting, missing homework, and returning home to get ready for a bedtime that is now LATE. Oh, but that is not the primary thing. AUTISTIC CHILDREN CRAVE ROUTINE. You have just disrupted their routine. Therefore they will be up later and may not sleep well. In some cases with agitated children they may require medication to help them settle to sleep. In which case they will likely be groggy in the morning.
3) I won’t even go there. So many things are wrong with this scenario that I am having a hard time imagining who could manage this. Perhaps someone with an entire support system of extended family members that the child is accustomed to doing the caretaking, where the child’s issues are milder, where the school system is completely supportive, etc., etc.
In our week with Vannetta Chapman, I reviewed her recent release “Falling to Pieces: A Quilt Shop Murder Mystery” in which the heroine, Callie, is a lonely young woman. She is taken in by a trio of warm-hearted Amish quilters with their own issues. One of the women has a child with a rare disease. She is fortunate to live in a very supportive community lessening the potential impact upon her in terms of loneliness. Still, Vannetta catches the nuances of this mother’s pain. These women agree to use the internet to help sell their quilts which will pay for medical bills as well.
The web can be a support system for parents of children with autism as well. If a child is having meltdowns, one cannot take her or him out in public to do the most basic of tasks. If the child’s odd behaviors are not so bad, can the parent deal with the looks and comments of strangers when the child displays these out in public. When the routine required to keep order in the household precludes attending spontaneous gatherings with friends, the social invitations dwindle to nothing. One huge benefit of the internet is that the isolated parent of a child with ASD can connect with other parents for support even if they cannot leave the living room.
When other moms are running off to get their nails done or attending such meetings as mentioned above, the mothers of a child with ASD may be just grateful to step outside the house, alone, to get a breath of fresh air. Can you be a breath of fresh air to a parent of a child with ASD? Offer to do something for them or come alongside of them during this difficult season of their lives. And don’t invite them to do something that is untenable to do – like attend a couple of months’ worth of group meetings on a weeknight away from their homes towing their special needs child along with them. Well meaning, maybe, ill-informed - definitely.