Not a mom or anyone else fail

Autism has been part of our lives officially since December 2001.  In reality, it's been part of our lives since Andrew was born. After a 5 day Pitocin induction, I knew something was off; he was in EI by the age of 4 months.   Now attending his 4th private day school, the 3rd based in Applied Behavior Analysis, he is on his way to heading towards the end of special education at age 22 and adult life.  He's a friendly young man, one who proudly and happily helped speak in front of thousands of people at the Autism Speaks Boston Walk, and never violent or aggressive nowadays... but he can be an anxious one.  Here's the problem: ABA and proven talk therapies like CBT or DBT don't mesh and neither provider umbrella organization wants to make that happen.  So, we are left with (not ideal) pharmacological interventions and lots and lots of love, accompanied by patience and creativity.  Me as a single parent, his sisters, his caretakers...  We live in a world far less likely to accept what they view as off behaviors from a 5'10 boy/man than a 4 year old with clear cut needs (at that age, his included constant tantrums, no language, having a large stroller, just to name a few).

We know kids with autism need structure; we also know they rely on routine and being around people they sense are not only are friendly but are not bothered by them or their stims. Christmas Eve, he was ruder than I have ever seen him, in a smallish, kind group in a large room, no sensory overload apparent with dear friends who don't judge.

A first at age 19, the Boy opened a Christmas present from our friend S. He said to her in this room of family and other friends “I don’t like this”. Trying to get him to say thank you, the giver said, "How about a different color?" He said “no”. He finally gave it back, saying "I don't want it".

I have *never* tried to make autism an excuse for not following the rules of basic kindness and having good manners. Have always taught him to be gracious, language broken down and social stories at times, the same as my girls. 

He didn’t even say thank you and we left; he pretty much ran for the door without saying goodbye. (Girls had their own car).  The mama cried a lot in the car, thinking how much I did wrong to allow behavior like what I was still no sure I had witnessed.  Now, you are not supposed to get emotional in front of kids with autism as they pick up on it, but it did beat yelling (which is what likely would have happened had one of my daughters acted so rude).  It was a wake up call, despite a bad week in other facets like worrying about friends and school, that the older he gets, the less control I have.  Let's be real, this is exactly what happens to any child- you let go and you lose control all at the same time as they get older.

This is the life of this autism parent... The only plus, there was to be a house (not my brightest idea) Santa would not be coming to Christmas Eve so no presents to wrap...  I had decided Santa 🎅🏽 will do a do-over on Christmas night for all the kids he “missed” Christmas Eve because his GPS was not working. (Note: We are purposefully NOT big on presents, rather presence).

Today, Christmas, at his grandparents, he was simply not polite or using any of the skills I have seen him use, some for years, and we left early. Tiny gathering. No one was mean or unkind. He was just *done*.

How I wish I could untangle the neurons and wires in his brain to make him feel ok, safe, and back to his normal. Every family is different and to my fellow ASD ones, you rock. Not what we expected but not what we would ever give up on. We learned to be flexible because we have to to keep our children safe and as happy as they can be. I want my Boy of 2 weeks ago back, but since he is struggling, I choose to take the pieces of Joy we can find.  I know they are in there, I know trying to pull them out is a BAD idea.  This has beenva year of loss and of being traumatized, both by his former school and by his father.

Know this and never doubt it. This guy brings me Joy: autism, tapping, pacing, vocalizing, crawling out of his skin and all... Merry Christmas 🎄🎁❤️💚❤️💙

My Bible study skills are very dusty, but as I recall Jesus was all about accepting and helping everyone- be it Zaccheus sitting up in that tree or the hungry where loaves and fishes multiplied to ensure everyone was fed.