Advocating with Grace

A Busy Year – Part 2

This summer, Storm began ABA therapy at ESNT, unfortunately in a location that was a 40 minute drive from our home.  However, before the school year started in August, an opening in a much closer location became available, so Storm was able to continue therapy.

School started up in late August.  Storm seemed to bond with his teacher almost immediately.  We met informally with Mrs. T just before school started so that we could introduce ourselves and help set her up for a successful year with him.

Two weeks after the start of the year, we sat down for an informal meeting with Mr. P, Mrs. T, Storm’s case manager from ESNT, and a couple of other teachers who interact with Storm on a daily basis.  We went over his IEP, BIP, and answered any questions they had about his quirky personality.  His PE teacher shared some amusing anecdotes of his positive behavior, and the Captain and I shared some of our concerns for the year.

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At home we instituted a “token” system.  Each family member is assigned a token color, and tokens are earned and spent in a variety of ways.  The Captain and I earn our tokens for various chores, Sunshine earns them for exhibiting good manners, using the potty, and doing chores, and Storm earns tokens based on meeting behavioral goals each day.  The Captain and I can then spend our tokens on things like going out to eat and “me time” things like his usergroup meetings or my knit nights.  Sunshine can spend hers on toys or candy, and Storm uses his for extending his bedtime, having a soda with dinner, and playing Minecraft.

Our ARD meeting was in mid-November, and Mr. P remarked that it was the smoothest and easiest ARD meeting he’s ever been to!  I am so thankful that we have been blessed with such helpful, attentive, and respectful people in regards to Storm’s educational needs.

It is now St. Nicholas day, and I am amazed at the progress Storm has made.  His violent outbursts have diminished from nearly daily to once or twice a MONTH, and he has begun self-correcting himself when he becomes upset.  He is making friends, and I am recognized with happy faces at his school by other children as “[Storm]’s mom!”

I think back on my own childhood and my sister’s struggles.  She and Storm share many of the same personality quirks and I’m certain she would be diagnosed with Asperger’s given the chance.  When she was growing up, those same quirks and stubbornness was often seen as a result of “bad parenting” or choosing to have bad behavior.  Now we know that it is more a matter of not having the ability to develop social skills and mental checks and balances to begin with.  NT children pick these up fairly easily, but autistic children need to be taught how to interact with others–how to detect and process the unspoken conversation in facial expressions, tones, and body language.

In my sister’s case, the general consensus was that good behavior just needed to be spanked into a kid.  Had Storm grown up in that era, he would not have the same support system he has now, and I am certain he would continue to struggle for the rest of his life.  I am optimistic for his future, however.  He is making incredible advances in his social skills and is learning to cope with fewer and fewer modifications as time goes by.  He will always be different, and he will always be special, but perhaps he won’t struggle as much as those who went before him.

I raise a toast to those who have tread this path in the past and paved the way for success for those who came after.  To the parents who have fought with school officials, to the autistic adults who scraped their way through life to make their own success stories, and to everyone who has stood up and advocated for a better life for those of us who see the world a little differently.  God bless you all!

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