Tuesday, February 18, 2014

We don't need a break FROM our children with Autism, we need a break WITH our children with Autism.

I'm a little hesitant to write this post as I'm aware that any opinion on parenting styles varies so much from family to family and even situations within the same topic can reflect very different realities.  I will be using generalization about raising Autistic kids, so please bare that in mind as you read.

Going against popular belief and the multiple comments I get from loved ones and even strangers, I proclaim with fervor, "We don't NEED a break from our children".  When I've spent an afternoon complaining to a friend about the "goings on" in our household, I can see why their conclusion is, "you need a break from the kids" or "do you have respite care, so you can get away?".  At the risk of sounding double-minded, YES we need those kinds of breaks too but that is not the primary resolution to our troubled minds.  If you have the time and the heart to follow along, let me take you on a journey into the deeper life of a family that has Autism in the center of their world.

If you have children of your own, then you know that they are the center of your universe (besides the obvious disclaimer that God is actually the center and your spouse is your life partner, so lets establish that right away).  That aside, your own children are who you live for, what you work for, who you would die for...you get the point.  When life throws a situation of physical or psychological disability your way, that doesn't change your strong animal instinct to protect and nurture your child and to give them the best life possible.  However, society limits your ability because of their capacity to understand and your own child may limit your chances of succeeding in the quality of life you wish to achieve.  In the end, you don't go anywhere and the thought of exposing your family and heart to ridicule in a community outing becomes daunting at best.  I have been there.  I know.  I have crumbled in total silence in front of strangers that could offer nothing but a cold stare.  All the pain of my children's screams echoing in my heart because its not just my privacy and my ego that is on display but their undeserved anxiety and internal torment.  Do I sound melodramatic?  If I do, you need erase your preconceived and discriminatory mindset and really listen to what I'm saying.

Despite popular belief that these children don't actually understand that they are different, and that they don't care about the trouble they are causing, or because they are spinning in a corner, they don't want to be with people or have friends, I say the opposite is true.  They DO know they are different.  They DO know they are drawing attention when they scream.  They DO want friends.  It is when their compulsive actions happen that they lose the ability to do what is right and therefore causing social discomfort resulting in withdrawal and outbursts.  And the saddest part is, they know it...and they sense other people are equally aware.  They have normal, if not high, IQ's and they have over developed senses so they can hear, see and observe more intensely than we can possibly imagine.

Now apply this new thought process to how a child interacts with the people in their family.  Parents, siblings, Grandparents take on a new role of companion and friendship.  Relationships outside of this sphere are difficult if not impossible.  These are the relationships that will strive to understand their minds and will cheer them on with all accomplishment's or failures great and small.  These people will read books about Autism.  They will talk to other families with Autism in order to gain greater understanding.  They will advocate for their children in business and personal settings.  These people will fight for their children's happiness and will protect them at all cost.  In their life, there may not be anyone else to lean on in the future.  They are at risk for abuse, neglect, isolation, despair and being shut out from society.  I can see that many of these young ones have the potential to grow up and never overcome the behavior issues and the violent tendencies that could lead them into a life of medication and psychological supervision.

To a reader, this is all about "someone else's kids".  To a parent, this is all about "the child that is in the center of my universe".  When I think of my own children being adults and how it will look to be 60+ years old and having to work through social and emotional outbursts with a 20+ year old, I can't comprehend it.  And here is where my topic comes full circle.  How do parents bond with their children at a young age when socialization with autism creates such a gigantic barrier?  How can parents learn how to deeply stay connected to a child who isolates themselves and will only script in a corner with a book or other obsession?  And then how do we translate that into the teen years and into adulthood?  How?  HOW!? 

When my husband and I married 6 short years ago, we gave our lives completely over to God and His Will for our lives.  We said, "use us for Your Glory, no matter the cost".  We didn't know what the cost would be.  We still don't really know what He is up to and I'm not saying our children were the cost but we would be blind to not realize that somewhere in our life of autism is a bigger picture of God's grace.  We have asked ourselves, "how can God use this pain?".  We have literally spent hours and hours talking through situations we find ourselves in.  We overwhelmingly find God in the conversations we have with people who are in our life ONLY because of autism.  To be honest, none of the people that God has led to our house would be here if our kids were neurologically healthy.  None of them!  And THAT, is where we see God.  So where do we go from here?  We don't have the answer completely but I piece it together with other ideas that we have witnessed in our community and that is the fact that families with autism need help.  In my short experience in this field, I can say the mothers have nowhere to turn.  And, what happens most of the time is they turn from the family and run to outlets of one kind or another (pampering, girls night out, shopping, and in some cases unhealthy self focus that leads to division).  Not to say they are all bad outlets, or to say they don't love their families.  I think the opposite is true.  I say, they love their families deeply but it becomes empty if you lose the reciprocal connection with the ones that struggle socially.  If you have one nuero-typical child and a child with Autism, you see the black and white contrast of connection.

Is the point I'm trying to make becoming any clearer?  Parents need time and opportunites to connect with their autistic kiddos in an environment that makes them successful.  Not trips to the store!  Not running errands or going to birthday parties!  The kids will fail.  They will feel worse.  And the parents will stop trying.

This past 3-day weekend, we dedicated most of the time to taking our children on "child-centered" activities.  We went to Santa Cruz and let them go on rides for a few hours.  We took them to Chuck-E-Cheese and church and to the park.  It was a whirlwind of fun, very exhausting and very expensive.  We obviously can't do that every weekend.  But, what I will emphasize is what my husband said at the end of it.  He said, "this was the best weekend we have had with the kids EVER!"  For 2 years we have had respite care come to help watch kids for date nights and other "us" time.  It's necessary of course but it also takes us away from the kids.  Now listen carefully to what I'm about to say.  If ALL of the time we are with the kids is stressful because of busy therapy schedules and school buses and in between is only errand and grocery shopping, then where does the bonding time come in?  If we don't plan specific bonding time, our children nor ourselves will survive the long haul.  We believe that  real help comes in the form of coming along side families and taking the burden on with them.  Sacrificing a gentle easy time at the beach and instead offer to come to an outing to the beach with a family so you can be an extra set of hands and eyes.  What this does is it creates a sense of belonging to the child (which is vital!) and also the family will feel loved and supported and maybe what is more important is they will feel safe.  When we tackle big events like an amusement park or San Francisco without extra help, we fail...big time!  It is a terrible experience for everyone and we come home wishing we had never gone.

I challenge anyone reading this, if you know a family or ARE a family that longs for bonding, that wants their baby boy or teen girl to bond with them like they never have, please consider creating time WITH your child in an environment where they will succeed.  I know first hand the heartache that comes from forcing a regular life on kiddos that have a hard time with "regular".  Take breaks WITH your kids.  Let them be free of schedules and forced trips to Target.  And when you get a sitter...don't always take off and leave them but instead bring the sitter with you.  Make it a family event.  Play in the sprinklers, bury your feet in the sand, feed farm animals, plant some flowers.  It might just change your life and better yet, it may change theirs.


  1. Wow Chella, you share some amazing insights! I love what you wrote, "Parents need time and opportunites to connect with their autistic kiddos in an environment that makes them successful" Very wise words - actually, those are wise words for all parents! :)

    1. Thanks Shadia. I know that writing is half the battle...getting the point across is an even great fight :) I know you understand.

  2. Wow and Wow!! I am trying to take it all in so good, such a realistic view into y'alls environment and family life! I want to thank-you for sharing this it, it is such a powerful and meaningful entry I love the connection you have made with it being so important to realize the heightened senses that are present and the importance of it all in their awareness! I just think you are really onto to something with this and the connections you have made is truly amazing and insightful! God Bless you and your family!

    1. Thank you DeAnna. I am blessed to call you friend. I have prayed for you and your husband over the years and hope you are both doing well with all the changes. Hugs to you :)


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