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Every Time.....

Leaving your house can be a scary thing.....especially for an Autism Mom. How can we make it easier?

Every time I go out in public with Ballerina and Music Man, I'm never sure what's going to happen.  Will they have an "A-Moment"?  Will I have to explain Autism to passers-by? And, if I do, will they believe me that I am dealing with 2 children with autism and they need to back off?  Or will they behave perfectly, earning the cookie at the grocery store or special treat when we get home?  I never know.  It's always a challenge.

This especially includes places where children gather.  I'm involved in local chapter of MOMS Club International..  And this local chapter (in particular) is a great organization.  It's nice to get together with other local Moms and share experiences.  We organize playgroups, have a Mommy's Night Out once a month, meet at local playgrounds or for Playtime At The Plex (at the Discovery Center), Craft Club, Book Club....all sorts of activities.  And I enjoy being a part of this group.

I was a part of this group when our Autism journey began.  Never have I met a more supportive group of people.  No one knew (specifically) what we were going through.  No one knew how much our lives had just been turned upside down.  But that didn't matter.  They all jumped in.  I had a "NT" (Neurotypical) and VERY social 4 year old, and when I sent out an email asking for help, people jumped in and said they would watch him while we took the twins to appointments, assessments, and evaluations.  I still don't know if they realize how much help that was to me (and my husband) when things were just beginning.

At that time, everything was a struggle.  Especially things that other Moms take for granted, like going to the playground.  You see, most kids will go to the playground and find their favorite activities, search for their friends and play.  Many times, an autistic child will demonstrate "behaviors".  They will "stim" -- which means they will engage in a repetitive body movement that self-stimulates one or more senses (taken from Autism Wiki).  For my children, this translated to flapping, spinning and licking (playground equipment, the ground, mulch [oooh, they LOVED mulch], and sometimes each other).  Additionally, they would tantrum if the noise of another child was too loud or if a child had a toy that made noise near them.  And, worst of all, they had a tendency to elope (run away).  I think my friends started thinking I only knew how to count as high as "3", because that's all I would do -- every minute or so, I would check to be sure I saw (1) Big Brother; (2) Ballerina; (3) Music Man.  It reached the point very quickly where I was hesitant to even bother going to the playground because the effort was just too great.

But I couldn't do that; not to the two of them, and I certainly can't do that to Big Brother.  But, even now, nearly 3 years later, it's still a struggle.  We choose playgrounds based on what I can handle for the twins.  It wasn't until VERY recently that I stopped bringing the stroller to the playgrounds because of my fears of them wandering.  I have finally learned to watch them.  I have learned to not go to certain playgrounds with both of the twins unless Dad is with me.  And then we each take responsibility for one child (Big Brother is capable of taking care of himself at the playground -- he knows to stay within reasonable sight of us and if he needs to leave for any reason [including using the bathroom], he is to tell us first).  And, at the first sign of trouble, we leave.

So, I have messages for friends of families just learning that they are raising a child with autism and for the families themselves.  First, if you know a family with an autistic child(ren) and you invite them to a playground, here are a few things that will make their lives easier:

(1)  Choose a playground that is fenced in with an easily guardable gate.  There are several good ones in the area for all ages.

(2)  Consider how crowded the playground is at the time you are proposing visiting.  If it is a crowded at that time of day, it may make things more difficult for both the kids and the parents.

(3)  If it is a playground that the family living with autism is unfamiliar, give them a chance to see the playground before making them give you an answer.  They know their children best and know how to recognize if that particular playground may cause a problem.

(4)  Don't be insulted if your friend brings their own snacks or their own set of activities for their kids.  Parents know what will soothe their children better than anyone and when it's time to bring out the "Big Guns".  Kids with autism depend on the familiar.  Let the family do what, for these children, is "familiar" without any judgement.

(5)  Understand if/when a quick exit becomes necessary.  Sometimes it may be to avoid the imminent meltdown that they recognize is coming (we often see warning signs).  Sometimes it may be a form a discipline.  Just say, "We'll try again another time", and mean it.  Every kid is entitled to a bad day, and every mom sometimes needs to hear that it's OK and that her friends understand.

Second, to those of you who are in the early stages of helping a child with autism, don't allow the fear of leaving your home to stop you from enjoying your child and the experiences that come with being a mother.  Don't shut your friends or your family out of your life by refusing to particpate in activities with them and their families.  Good friends will always be there to support you and listen when you need to talk.

Families with children on the spectrum should not have to be afraid of what may happen when they walk out their front door.  I know....we are.....but we need to work on that.  Life is continuing around us, and we can't be afraid to take part.

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

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