Love, in every-all way

Roughly 6 years ago I was sitting at a kitchen table in a big, beautiful home in Wellesley, MA.  I was doing my weekly home visit with the mother of a 12 year old autistic boy.  These visits usually started with us chatting over coffee regarding her sons latest and greatest at school.  I was his primary teacher and in charge of implementing his 20 some-odd IEP goals.

On this particular day, we were talking about how she came to find out about her sons Autism.  She stated it was literally like a light went out in him.  He had been hitting all of his milestones: walking, started talking, appropriate play...

And then one day he stopped talking.  His play became "stereotypical" and socially he became withdrawn.

The mom stated all she wanted was to hear him say, "mama" again.

But, nothing coherent was coming out of his mouth.

The doctor that she was working with attempted to educate her on how to parent an autistic child.  He said one of the most important things was to create a routine. Autistic people crave routine and it will avoid a lot of unwanted behavior.

Mom says, "I could NEVER live my life that way.  I HATE routine."

She is a lawyer turned SAHM.  She has a strong, intelligent nature about her.  I loved how she completely honored her sons limitations, but she wasn't going to change her personality or way of going through life...

For example, medication.  In the beginning she avoided medicating his symptoms.  "I wanted him to be who he was, naturally."

But, then, it came to the point where his symptoms (aggression, ocd, manic) were no longer being managed by behavior modification.  So medication was prescribed and a happier, calmer boy ensued...

Now I don't know if it's a nurture/nature thing, but her son was one of the most flexible, laid back autistic kids I ever worked with.  He was very compliant with change and didn't need a fist full of Skittles to get through an unexpected change in his daily schedule.

After 5 years of working with children and adults with Autism Spectrum Disorder I found myself a tad gun-shy with becoming a parent.  There is no test for Autism when you are pregnant.  Prevalence is estimated at 1 in 110 births.  Some children can be diagnosed as early as 18 months (some studies say a year old) and as late as 3yo.  So as Milo got older, I referred to my trusty "What to Expect..." books and compared him to where he should be at each month...and, luckily, he has stayed in his target range of what is expected for his age...

When I'm having a particularly rough time with Milo, I often think back to the parents I worked with those years.  How they began their parenting journey so full of hope, excitement, and anticipation.  And what they must have felt when their child wasn't "normal." By the time I worked with the families they were 10 some-odd years into the diagnosis and well past the grief stage over the loss of having a "typical" child.  The best parents to work with were the ones who really understood the disorder and the specific limitations of their child.

I was in awe of the committment these parents had.  The endless meetings with teachers, speech and language pathologists, occupational therpists, home visits, respite care, staying consistent with behavior plans, med administration and the looming cloud of residential care.  Now, I know, there are many, many parents out there who have not made a similar committment to care for their developmentally delayed child, but I've been privy to some amazing parents.

I've been lucky to witness parents who have a fierce, protective parenting ethic that keeps them by their childs side with their childs best interests.  No. Matter. What.

I used to shake my head in wonder at how much these parents go through. Daily.  And the strength, courage, and responsibility they had.

I used to wonder if I had what it takes just to be a parent....let alone a parent with a child with special needs...

And now? I can safely say, ABSOLUTELY.

What a wonderful (confidence, fiercely protective, a nothing-but-love promise) feeling it is to be a parent.

No matter what...

You'll never walk alone, little man. Love you...(in) all ways..