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.
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.
ReplyDeleteI 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.
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!
ReplyDeleteThanks 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.
ReplyDeleteKathy, 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!
ReplyDeleteCarrie, 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!
ReplyDeleteAnd 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.
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.
ReplyDeletePrayers are said for all.
Bless you and yours,
Wendy
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!!!
ReplyDelete