July 2nd, 1999 was Lucas's diagnosis day.
This was one day before his third birthday, so it's easy to remember that day.
Lucas just turned 23 this week.
So I thought I would do a video blog this week looking back on the advice I would give
myself way back two decades ago and hopefully this might help other moms and parents and
grandparents who are just getting children diagnosed and feeling the way I felt probably
20 years ago.
So I'm going to cover this important topic this week.
Hi, I'm Dr Mary Barbera, autism mom board certified behavior analyst and bestselling
author of the verbal behavior approach.
Each week I provide you with some ideas about turning autism around.
So if you haven't subscribed to my youtube channel, you can do that now.
This week I want to wish my son Lucas a very happy 23rd birthday, 23 turning 23 is not
a typical milestone that we would necessarily have a big uh, full-out, uh, celebration of
like reaching 18 or 21 for instance.
It does mark 20 years since Lucas was diagnosed with autism, which came just one day before
he turned three.
And even though I knew the diagnosis was coming and knew that I wanted to start ABA treatment
and I knew that I needed a diagnosis to start ABA treatment, even though all of that was
in play, I was, it was still a very devastating day.
And I describe it as one of the worst days of my life.
I was extremely stressed that day and for weeks and months to come, um, because I really
didn't know how to get things up and running.
And I was worried that I was losing time.
20 years later, I'm not only a mom to Lucas and Spencer, my typically developing son who's
just 18 months younger than Lucas, I also am a behavior analyst, I wrote a bestselling
book called The Verbal Behavior Approach, earned a phd, I'm an online course creator,
I started a podcast in January.
So I'm like 20 years deeply ingrained in the autism world.
So I not only have my experiences with Lucas 20 years later, but also with hundreds of
clients directly and thousands of parents and professionals around the world that I've
helped.
So I thought I might look back and give myself five pieces of advice that I didn't know back
then cause I knew very little about autism.
So I'm hoping that this would help you possibly or someone that you know that you can send
them to this video.
First piece of advice is it's not your fault.
Um, even if you were in denial like I was for over a year, I was in deep state of denial
when my husband first mentioned the possibility of autism.
I even one of my very first video blogs back in 2017 was on denial and how denial really
does hurt the child's chances of progressing and reaching his or her fullest potential.
So even though I was in denial, it's not like I had Lucas locked in a closet for three years.
I was getting speech therapy, he was going to typical preschool.
I was trying to engage with him.
I was trying to teach them to talk.
I was trying to teach them to imitate.
I was not really trying to potty train at that point, but you know, I was trying to
be not only a great parent, but I was also trying to get Lucas what I thought he needed.
But it wasn't enough because I did need the diagnosis of autism and I needed to start
intensive ABA, but I didn't know that.
So, um, I didn't know that waiting and, and watching and worrying were just delaying the
treatment that Lucas needed and were hurting his chance of recovering from autism, which
I had no idea was possible.
Which leads me into advice number two I would tell myself, because once I found out about
a month or two before Lucas was diagnosed, I found out about a book called, let me hear
your voice, which explained how this author, Catherine Maurice, recovered her two kids
with autism using an ABA approach.
When I went in for the diagnosis and really when Lucas got the diagnosis and we started
ABA therapy, I was really hyper focused on recovery.
And even in my book in Chapter 12 I talk about how I really felt like there would be a day
when we would have a recovery party that that it was a very black and white thing.
And I would go back and tell myself that recovery from autism is not usually a black and white
issue.
And while Lucas benefited greatly from ABA, I can't even imagine what our lives would
be like if I wouldn't have found ABA initially.
While he read it.
He benefited.
He is, didn't come close to recovering.
He's, he's still very impaired.
He just turned 23 but he is happy, he is safe and he is as independent as he possibly can
be.
So he didn't come close to recovery.
But even in my clients who did recover, they don't know that they had autism.
Some of them are going to college and learning to drive and these kids, it's not like they
um, don't have other issues.
They might have lingering issues like learning disabilities.
A few of them have anxiety disorders, some of them have depression.
Um some little kids that no longer have a diagnosis of autism, have articulation problems
that they still struggle with or executive functioning issues.
But many typically developing kids also have lots of issues too.
And in the end, I learned over the years that there is no such thing as Joe normal.
And my goal now is to help each child reach his or her fullest potential to be as safe,
as independent and as happy as possible.
So, um, advice number two is, you know, it's fine to focus on recovery, but it's usually
doesn't work in that there's not a day or there's not a year when everything unfolds
and then your life is normal.
There is no such thing as truly normal.
And that is something I've, it's taken me two decades to learn, but I've learned it
and I would tell my old self that.
Number three, it's going to be a marathon, not a sprint.
And it's actually going to be more like a marathon on a roller coaster.
Um, there's going to be twists and turns.
There's going to be, sometimes you feel like everything's going great, then you have setbacks
and so it's a very turbulent situation and buckle up because it's not going to be a smooth
ride.
Number four, teaching and advocating for your children.
Even if my typically developing son a Spencer and Lucas teaching and advocating for your
children never ends and you'll need to spend your whole life learning how to be a better
teacher and advocate for your kids.
This in the end will make you a better person.
Um, but it is going to always be, there's not like a clear cut, oh there, they're fine
now because then it's the next level.
It's, they're going to college now.
They still have executive functioning issues or, or they're graduating from high school
and they're going to this placement and they'll need a shadow and there's just always another
thing.
But even for typically developing kids, there's lots of my son Spencer going to college and
there's new challenges and new issues you just have to put, keep putting one foot in
front of your other to be your children's best teacher and advocate.
And finally I would tell myself that autism is not going to ruin your life.
It did.
I thought maybe it would.
I thought maybe when he got the diagnosis of autism, the curtain would fall.
My life would just be horrendous.
Um, and if I could snap my fingers and make autism go away for Lucas and me and for all
the families that I know and work with, I would do it in a second.
But autism is not going to go away with a snap of the fingers and it's also not going
to ruin our lives.
It's not going to ruin my life.
I have found my whole purpose in life and that is to help Lucas achieve his goals, help
Spencer help myself.
Um, Lucas will continue to make progress and I'll continue to help keep the bar high for
him and I’ll continue to make new goals and set my sights on higher goals to help
millions more.
So I hope you enjoyed these five pieces of advice.
If you are struggling with a new diagnosis or if you are years into it and still struggling,
um, I hope my insights from the last 20 years might, might help you think about things a
little bit differently.
So if you enjoyed this video, please share it with others, leave me a comment, give me
a thumbs up.
If you would like to learn more and join me on my mission to turn autism around for millions,
I would love it if you would go to marybarbera.com/join to sign up for a free guide and I will see
you here next week.