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5 Things to Know about the Mother of a Child with Autism, part 5

actionThis has been such a beneficial series for me!  I have learned a lot, and hope that this information has made it to some others who have also needed to read it!  A big thanks to Amy Fenton Lee for letting me post a few of her well-researched findings!  You can view part 5 of her series here.

Here are the excerpts from this part of the blog that stood out for me.

Part 5:  She values action over empathy.
In my experience, some of the most capable and competent individuals are parents of children with a special needs, and particularly autism.  These women have often answered the call to create a specially tailored parenting plan for their unusual and often high-demand child.

Not coincidentally, I have discovered that this same group appreciates “can-do” life-helpers who are solution driven.   Moms of children with special needs largely value action over empathy.  And this is especially true when these parents engage their church staff and children’s ministry team.  Interviews have revealed frustration and even anger for instances when a church staff member said all the right things in terms of understanding the family’s plight, but failed to follow through on an action step.

Amy has a lot of action steps for churches, that could be tailored to your specific needs – whether it’s for a church, a playgroup, etc.  Again, please check her blog for that.

fog 1As we wander through the “haze” of beginning to help our own child, I can tell you that we personally value attempts to help in different ways.  We cannot always take everyone up on their offer to help, but it gives us hope that when we come to a point where we do need help – child care, shopping, a meal – that there will be someone who can meet that need, because many have already offered help!

The attitude of “your child looks fine, let’s just see how it goes” does not help.  Our child, and so many others, need to feel safe in their environments: school, church, playgroups, gym lessons, for example.  When they do not know what is expected/required from them, they do not understand why they get in trouble.  The ability to make that connection is not there.  So “waiting to see how it goes” does not help our child(ren) in the long run, and doesn’t help a teacher/caregiver.

The way to get the best results from our kids is to clearly express what is expected, that way everyone can work on those expectations.
*Does a child need to sit still for 5 minutes during a gym lesson while the rules are explained?  Make sure that we, as parents, know that so that we can work in “fun” activities where we can practice sitting still.  We will also probably have additional therapists work on these needs with our child as well.  
*Will our child be required to switch locations at church or during playgroup?  We need to know.  Why?  So that we can help you by preparing our child and making the transitions go smoothly.  This usually involves a parental “walk-through” before our child even participates in the activity.  It could likely also involve taking pictures of each location for a picture chart to help prepare our child.  It may also involve having the child come to the area during a non-meeting time, to get used to the environment and talk about the rules for being in that group. 
*Is it ok for a child to remove himself/herself from the group if they can’t participate?  Many kids are bothered by lights that are too bright or colors that are too intense in a given location, or by noises that most people don’t pick up on immediately.  Sensory issues play a big part in a lot of children with autism.  Maybe they get too much input from their senses, maybe not enough.  Again, time spent discussing these issues with parents will help to produce the best outcome for the child and the teacher. 

Each child with an autism spectrum disorder (ASD) has unique issues as compared with any other child with an ASD.  Just because two kids have an ASD does not mean their needs will be at all similar.  They might be, but it’s not a given.  It’s like saying, “Jack and Bill have the same needs because they’re both boys.”  To some extent, they absolutely do.  But what if Jack is allergic to nuts and Bill is not?  Their needs in that area are vastly different!  And chances are, Jack’s parents will be upset if he accidentally has some nut product while he’s in your care.

If you know there is a need – regardless of the need – ask as many questions as you need to, in order to feel comfortable in providing care for that child.  There are so many options available for awareness and education.  My kid’s “normal” is different from a typically developing child’s “normal”.  However, it’s his “normal” and we need to work on making sure that we understand all of the “normals” with whom we interact.

Empathy has its place, and we, along with so many others, genuinely appreciate the care and compassion expressed to us.  We also appreciate when people step up, and step into our lives, to help.  What has that help looked like for us?  Childcare, loaning of research/informational materials, a friend on the other end of the phone/email who has walked these steps and has just the right word for us, a hug, wearing an Autism Awareness pin to support our guy and so many other children.  And I have no doubt that this help will continue and will give us the ability to flourish inside of our new “normal”!

bridgeIf you’ve missed this series, you can read them at –
Part 1- She may feel relief upon receipt of an Autism Spectrum Diagnosis
Part 2- Grief and Hope
Part 3- She fears exclusion
Part 4- She needs your respect, not your opinion or advice

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