Lessons I Never Asked To Learn

I’m honored that Jill asked me to guest post for her today! My name is Jennie. I am a stay at home mom to a toddler and a preschooler, who, for blogging purposes, I call Moe. He is three and has autism.

Jill asked me if I would write about what I’ve learned since Moe’s diagnosis, which was just over a year ago. Despite the increase in autism diagnoses, and therefore attention paid to autism, many people don’t really understand what it means to have an autistic child. So here is a list of some of the things I’ve learned. Some are about autism specifically, while some are about me and our new place in the world.

1. Autism is not just one thing: I knew that autism was a “spectrum” disorder, meaning that some kids were higher functioning than others. Before I knew kids with autism, I always thought of this more like a cold – it might be mild or it might be severe but it is basically going to look like the same thing. But autism is not like that. One kid might be incredibly sensitive to lights and noise, never want to be touched, and learn to read by age 2. Others, like my son, don’t talk but are all about hugs and snuggles. These kids couldn’t be more different, but they are both autistic.

2. Autism is a disability: I didn’t really think of kids with autism as having “special needs” in the same way that kids with other disabilities have special needs. It took me a while to realize that kids with autism are definitely special needs kids (or your preferred term), and that – important distinction - I am a now parent to a special needs child. As big an identity shift as it was going from “Jennie” to “Mom,” this shift was much harder.

3. Autism affects everything: I knew, at least at a basic level, that autism affected the social communication pieces of a child’s development. But I didn’t know that many kids with autism also have trouble with fine motor skills, gross motor skills and sensory processing. Toilet training can be especially challenging and often happens late. Many autistic children, including mine, have major sleep issues that can last into adulthood. And the stress that comes with all of this will bleed into your marriage, your family life, your social life, everything.

4. Autistic traits may change over time: When my son was first diagnosed, he didn’t have many behaviors typically associated with autism, like hand flapping or other stimming behaviors, echolalia (repeating words back without really understanding their meaning), or adherence to rigid routines. I asked our doctor if that meant he would never have them, and the answer was “maybe.” Some behaviors come and go while others are there from the start and never leave. Still others may never appear.

5. You will never know if you did the right things: There are a lot of different behavioral interventions out there, including ABA, Floortime, PRT, and Son Rise. There is occupational therapy, speech therapy, and integrated playgroups. There are diets to try, biomedical interventions, recreation therapy, music therapy, and a host of other things you can try. You can surround yourself with professionals that you trust but they can only make suggestions. As the parent of a child with autism, you are ultimately responsible for making the decisions as to what you will do, and you will never really know if the choices you made were the right ones. You will question yourself every day.

6. You are not alone: This is the most important lesson to learn. Know that there are others going through the same experience and they are a loving, supportive, and helpful group of individuals. At first I didn’t want to meet other autism families because I was scared of what I might see. This is a mistake; don’t isolate yourself. Seek out others, read their blogs, join their forums. Go to autism events. The people you meet will save your life.

You can read more about Jennie at her blog, Anybody Want A Peanut? She also writes for Hopeful Parents, and was recently featured at Support For Special Needs.


TheSublimeLife said...

Jennie, thank you so much! I love your post! Part of me thought, "oh #2 and #5 were especially relevant to me"... and then I realized honestly, I think they are all extremely relavant to me personally. Great post, definitely something I hope my family will get to read!!

JennieB said...

Thanks for having me!

Phoebe said...

Amazing post, Jennie. I would like to give this to the parents of many of my patients - your points are relevant for parenting children with many different disorders. You are very brave and very wise.

Anonymous said...

Great post Jennie!
You've helped me understand this spectrum much better! Thanks!!

Jen Currier said...

Jennie- (So weird to write to you that way, because I spell mine the same way! ) :)
Such a GREAT post! It is filled with fantastic information and written with such honesty and clarity that it is really touching.

Since becoming the mother to a child with more "classic" special needs, I have adopted a new understanding of language and how the words we choose can empower or dehumanize our children. I am careful to always put the child first and the disability second, because my child is a child first and foremost. He is not defined by his disability. So, I am always careful to say that "I have a baby WITH Down syndrome" and never a "Down syndrome Baby".

Autism doesn't define your son and it doesn't define your family. It is simply a part of what you all deal with. And you, honestly, seem to deal with it with a ton of grace!

P.S. I really hope this doesn't sound critical, because that is not how I mean it. I thought I would share something that felt really right for me when discussing my son's disability.

Grace said...

#5 -- never knowing if you did the right thing -- is something, I think, that terrorizes every parent. I fight the battle with it almost every day.

From Tracie said...

This is a great post! I don't have a child who has autism, but after reading this I have a better understanding of what "spectrum" means.