10 December 2011

Isolation and Loneliness and the “Good Intentions” of Others


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.

7 comments:

  1. Carrie, thank you so much for the thought provoking post. Sometimes, well, alot of times, people just don't think. Especially if they aren't going through, or have NEVER gone through what someone else is experiencing. Isolation is tough, for whatever reason. I like your suggestion of what others can do for the parent of a child with ASD or for that matter, anyone that is isolated such as the elderly or people with an illness.

    I have experienced some lonely days this year, because of illness (which I know is temporary), but you wouldn't believe the invitations I have received to go to social functions, birthday lunches, lists of food I can fix for these functions, etc., from well meaning people who know what I am going through, but not really. One day my pastor's wife came over and I burst into tears, because I was sooo lonely from not being able to get out for awhile. I was thrilled to have someone to come over to see me and pray for me!

    When I get through this, and I will, I want to be more mindful of others who may be lonely or isolated for one reason or another. I believe I have a greater compassion and understanding, because of this...I certainly hope so anyway.

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  2. Diana, having gone through a full year where I was so ill and stuck at home I fully know what it means to be isolated in that way. When you are too sick to drive you begin to find out who your real friends are. Those ones who show up at your door and come visit with you. I totally agree with you - what can you do for your lonely neighbor as Jesus defines neighbor. I am always floored by the people who ask me to do things like that despite knowing that I am physically unable to do so many things. Thanks for visiting with me today, Diana. Blessings!

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  3. Thanks for tagging me in the FB post, because I wouldn't want to have missed out on this discussion. You are right on, Carrie! And maybe this is opening a can of worms, but I fear that church falls into this category of kind but clueless at times. Our family--which by the grace of God has been spared divorce--still has a great deal of difficulty doing much of anything together outside the home. My husband is more isolated than me, because he doesn't have the amazing internet connections I do. It has made all the difference in the world to me to have writing friends, and a couple of ASD support groups online. Thank God for the internet, and for friends like you.

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  4. Kathy, I was at a writers' Christmas luncheon today and the ladies commented that the people who really understood what it was like and who could help each other were, GASP, the PARENTS themselves!!! We all thought that was great insight. Admittedly, sometimes you need someone outside of the situation to give another perspective. Thanks for sharing and let us keep praying for each other and our kids!

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  5. Carrie, you are "right on" with these thoughts! I honestly think that unless someone has raised, or is raising, a special needs child they really have no idea what life is like for that family. They can speculate and they can have compassion. But to really know the isolation and effort that is put forth just to go to church or the grocery store... I don't think they can fully understand. We have missed many occasions but I don't regret it. It was just sometimes frustrating that others didn't realize the extent we had to go to to be somewhere, like a Christmas Party!
    And asking the parents to come out at night...that's crazy. Obviously this person has no idea :) Our daughter's worst times of day are early morning and evening.

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  6. Wow! Amazing post and discussion! We just found out a few months ago that my grandson has Autistic Spectrum. A broad range. At least we finally know what is going on and learning daily. My daughter had bi-polar and is still dealing with that. My other grandson had ADHD. All have different criteras but is a daily/nightly struggle. I myself have congential hipdysplasia, scoliosis, and fibromalagia. Constant pain 24/7.
    Prayers are said for all.
    Bless you and yours,
    Wendy

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  7. Yes there are the clueless. Understandable, but what makes me saddest of all is that they often don't care to become the un-clueless. I was part of a group to start an autism ministry at a church once. Started off great, but when the main guy, who had been jobless, got two jobs (in order to pay the debt of joblessness) he no longer could head the effort. They looked to me. They said I would understand what was needed. I tried to explain that it was like the blind leading the blind. Not in that I didn't understand, but that *I* was one of the ones who needed ministering TO. The greatest tragedy is that many families with special needs have extraordinary gifts unrelated to the SN issues, that go underutilized because those families are consumed with the care of the child. The church loses those gifts!!!

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