Hi I’m Dr. Mary Barbera, autism mom & Board Certified Behavior Analyst.
In celebration of Lucas’ 21st birthday this week, in this video blog, I’m going to share
5 lessons I’ve learned that might help you!
A lot of these lessons are in Chapter 12 of my best-selling book, The Verbal Behavior
Approach which was published a decade ago, has sold more than 50,000 copies and is available
in 10 languages. So here are my lessons:
1) The first lesson is that your autism journey is almost certainly going to be a marathon,
not a sprint.
It’s also not going to be a straight marathon.
It’s more like a marathon on a rollercoaster.
You could be feeling like things are going great, and then, suddenly, something happens.
As you know, life continues to go on so as you are putting things in place to help your
child get better, other events like deaths, job losses, financial struggles and divorces
sometimes also happen, and they may affect your child more than other family members.
Even if these external events don’t happen, there is a pretty good chance that your child
may develop a new medical problem in addition to their autism, like when Lucas developed motor
tics at the age of 6 or when he started exhibiting self-injurious behavior and aggression related
to pain when he was a teen. I talk about Lucas’ medical issues and diagnoses in my Importance
of Ruling out Medical Issues video blog a few weeks ago.
This gets me to lesson number 2...
Medical Issues such as diarrhea or constipation, severe sleep and feeding issues, seizures,
motor tics and any kind of pain are not a part of autism.
I believe that Lucas and most of the kids I know with autism have other medical issues
that need thorough evaluations and treatment.
Don’t let medical or behavioral professionals make you believe that these problems can be
chalked up to autism alone.
Here’s lesson #3….
Whether your child is 2, 12, or 20, the best way I know of to keep track of progress
as well as to keep data on medical issues, complications, and setbacks is this: Buy a
dedicated calendar so you can write down new therapies, medications, supplements or
even vitamins are started. So I get a calendar like this every year, and in it I write down the medical issues, setbacks, new behavioral changes.
One time when Lucas was young, he had severe problem behavior because
I started a multi-vitamin which contained copper, which he and many kids with autism cannot process well.
You can also keep track of sleep, the success of community outings and problem behaviors
at the same time.
I’ve kept a calendar like this for over 6 years and this data helps me figure
out how to get Lucas’ major problem behaviors to 0 through a combination ABA therapy plus
medications for his various medical issues including autonomic nervous system issues and allergies.
Lesson number 4: Recovery from autism is possible, especially for children who are mildly affected and start
treatment before the age of 30 months and ABA leads to dramatic gains, even for older
children.
Just because Lucas didn’t recover from autism, doesn’t mean your child won’t.
And, the great news is that even when children don’t recover, ABA still makes a huge
difference, especially with very young children but even when ABA is started later for older children,
teens, or even adults.
And, my final lesson today is to make sure you put the oxygen mask on yourself first.
As you advocate for better medical and behavioral care for your child, you really must take
care of yourself.
You only have one life to live so you need to learn to enjoy it, even as you are tackling
autism head on.
Autism has been huge life-changer for me, but I’ve always managed to continue striving
to reach my goals and to learn everything I could to help my son, and then eventually,
I started helping a lot more people.
So happy birthday to Lucas, he turned 21 this week and from the dedication of my book which I wrote more than a decade ago, I write…..
to Lucas, who has taught me how to love unconditionally, to hope but not to expect and to appreciate
the small steps along the way.
Please comment below and I’ll see you next week!