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May 18, 2022 24 mins

As any parent who has been given a health diagnosis for their child knows, it’s a punch to the gut. Shazi opens up about the day her son, Zane, was given his autism diagnosis and was told he may never speak. You’ll hear a candid conversation with her mentor, Lisa Ackerman, Founder of TACA (The Autism Community in Action); Lisa shares the story of her son and why it propelled her to provide education, support, and hope to other families living with autism. We then hear from developmental pediatrician Dr. Stephen Cowan — the doctor who first gave Shazi’s son his diagnosis — on the steps parents can take to move forward and why the future holds so much hope for children with special needs.

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Episode Transcript

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Speaker 1 (00:00):
The Healthy Baby Show is a production of My Heart
podcast network and Healthy Baby dot Com. I would tell
families after the diagnosis, it's not game over, it's came
on and you need to find your hero to help
pull you forward. And my hero was my kid. There's

(00:24):
so much about having a baby that I wasn't prepared for,
and I feel like I've learned a lot. I want
to let you in on what I've discovered and save
you the time and effort, give you a shortcut through
the hours of research, correspondence with experts, the roller coaster
of it all, so that you can walk away with
new knowledge that you can act upon. Every episode, this

(00:48):
is the Healthy Baby Show. I'm chassivas from you. Just
heard from my friend and mentor Lisa Ackerman. After her
son was diagnosed at two and a half in with autism,
Lisa started a parenting support group that later became the

(01:10):
nonprofit TAKA the Autism Community in Action. Lisa has helped
so many parents navigate the moment after a child receives
a diagnosis. For those of you who don't know, autism
is characterized by three sets of core symptoms of repetitive behaviors,
A challenge with communication, be it verbal or nonverbal, and

(01:32):
then the development of social skills that enable us to
really connect with each other. And as I've talked about
in some earlier episodes, like Lisa, my own son saying
was diagnosed with autism at the age of two, and
she's right that when your child gets a neurological diagnosis,
it may feel like a punch to the gut, but

(01:53):
it's game on, not game over. And she knows because
she's lived it, and so have I. Yea as June one,
nine o'clock meeting, I remember like that was yesterday. So

(02:14):
our pediatrician was on vacation and the sub was in
and I said, for the third time, he's not speaking.
It's like he's deaf. He can't understand me. He is
constant energy, he is on fire, and he's in trouble sleeping.
And she said, you need to get to a neurologist,

(02:35):
and you need to get a speech and language evaluation
and a hearing test. So I made all the phone calls.
The first one that came up was the speech evaluation,
and she looked at me and said, so you're here
for autism, and I'm like, no, you're my first appointment.
My second appointment was the audiologist, you know, trying to

(02:57):
put headphones on the kid was like you were trying
to cut his head off. On the third point was
the neurologist and he's like, well, you already know he
has autism. Why are you here? And unlike the speech
pathologists that we need to see you, the audiologists that
we need to see you, and now we're here and
they're like, he's like, oh yeah, he's on the spectrum
moderate to severe. I'm putting the moderate word in there

(03:18):
for you. And it was the worst experience. And honestly,
I don't feel he was trying to be mean. I
think he was exasperated with his day and he was
exasperated with Jeff destroying his clinician room. I remember mine.
It was April twelve, two twelve. I know better than

(03:39):
anniversaries and birthdays, am with you. It's oddly funny. I
remember the same speech therapist because the neurologists have such
a long wait list, and she gave us the autism diagnosis,
and it was really difficult because for us to say
had regressed. He hadn't always been that way. He used
to talk and dan Us and do these other things,

(04:02):
and it was just the whole thing was so shocking.
There is a quality of shame when something has been
given to you that you didn't expect, and it's it's
a kind of shame when a diagnosis is handed to someone.
Dr Stephen Cowen is a pediatrician with over thirty years

(04:23):
of clinical experience. He has a subspecialty in developmental pediatrics,
which means he takes the time to understand how a
child is integrating and developing from each stage to the next.
In fact, he gave me zanes diagnosis. When you tell
someone you know they're one year old, this is asthma,

(04:45):
there's this dance people go around not saying it because
people start projecting someone on a respirator or someone where
you know, oxygen, when in fact that's not the reality
at all. But that's what we project out of a word,
you know. With the diagnosis, my mind and my heart

(05:06):
went to all of the worst possible outcomes. This could
be a life sentence. And actually I remember you telling
me there's so much to be done here and we
need to start addressing all of these other things. Yes,
and so game on is a really great statement because

(05:27):
it means let's get going. Yes you're in grief, Yes
this hurts, Yes this is scary, but let's get going.
I can tell you I remember the first six months
or so of sort of diagnosis and the level of

(05:48):
anxiety and stress and fear that I had absolutely transferred
to Zane. And if those symptoms of autism were already prevalent,
they were exacerbated by my fear because he's looking to
me as a source of comfort and safety, and your
child is always looking too, regardless off they're typically developing
or not. We have to hold it together for them.

(06:10):
It's taken me a long time to get comfortable knowing
that I'm going to be a safe space for my
son for as long as he will have me in
it as a gift. Your relationship to the child has
the shift to be a more empowered state, and you
have to be held and supported in doing that. So

(06:32):
who's supporting mom or dad or any parent is just
as important as supporting the child. Game on means we're
a team, and you gather your team. So I started
gathering my team, and that team included Lisa Ackerman, who
you heard earlier, and here's the advice she gives to

(06:54):
all parents in this situation. We divide the problem and half.
You know, you start your e L intervention therapies, applied
behavioral analysis, speech and no team. And then you get
a functional medicine doctor like Dr Rosen, and you peel
back the layers and do some testing labs. Every kids different,

(07:16):
you know studies today, every individual with autism on average
has four point nine additional diagnoses that are medical in
nature and effect physiology and behavior. And if you fix
those things, test, treat and fix, their life is more comfortable.

(07:37):
They can actually learn in a typical environment and they
can make extremely positive progress. You ended up being my mentor.
It's now been ten years, Saga, and you're one of
the first people who gave me a roadmap to follow.
What would you tell me today if I called you
saying the neurologist says that I need to get comfortable

(07:59):
with the US and find a way to live with it.
I want to tell every parent to consider this your
master's or PhD program and never stop learning. And the
best thing about autism truly, his research is coming at
a massively fast pace. There's fifty to a hundred abstracts
being published every week on New treatments and therapies, so

(08:23):
we should have great faith. We may not have the
answer today, but it's coming and it's coming fast. Well,
the science is really clear when you're looking at a
lab and you see gut dispiosis candida, you see the
yeast is so high. I remember telling you that I'm
like Lisa. He does this thing where he's up all
night long and he's laughing, and it's cute at first.

(08:45):
Then after a while it gets a little bit scary
because it's like this maniacal laughter. And you're the first
person who was like, oh, that's yeast. You know. It
was like, oh, so you can treat that. Oh, this
has something to do with gut health. And there were
so many things that I had learned that they didn't
realize were opportunities to improve things overall well being in

(09:07):
health that I think are fundamental to all of our children. Oh.
I have a sticky over here that I look at
all the time. In the nies, five to t of
our children had chronic health issues. Now we're in it's
almost fift of us children have chronic health issues. So
I wouldn't say it's just autism, chronic eggsama, chronic nightlakening,

(09:31):
chronic reflex bomps on the shoulders and elbows shouldn't be
on typical children. Ever, these are all really commonly easily
treatable items, and it shouldn't be on kids with autism.
So we should do something about it, and they shouldn't
have dark circles like me. But because I'm not sleeping,
So I just encourage people like, if something doesn't feel right,

(09:52):
and if they're putting something on a prescription pad that's
a daily medicine for your kid, maybe there's something else
you and consider. In addition, whenever I see meds, I
love meds. I think they save a lot of people
from a lot of things, but I have a high
respect also knowing that it also will mask the issue,

(10:13):
not treat. So I would encourage people to think beyond
a prescription pad as to what's the underlying cause? What
can we do to test and treat? What do you
tell parents who they're thinking of have a baby and
they're thinking, gosh, the world is pretty crazy. I mean,
fifty children have a chronic disorder. What can I do
to create the best possible outcome? Well, I love our

(10:36):
collaboration with neurological health Foundation one. They have a great
downloadable PDA. Take a look at it. Work through the
issues like water, food, toxins in the home, pesticides. If
you could do one week before you get knocked up
for real, great or if you are pregnant right now,
do not fret. If you have a brand new baby.

(11:00):
I always tell people, please, please, please love and enjoy
that baby. Don't look at everything like it's hard to
be not on pins and needles. Could try to love
and be present. But if you have a concern, bring
up that what to expect when you're expecting book. Look
at the milestones and observe your kid critically, and then
maybe have one of your dear mom friends who's had

(11:21):
multiple children look at your kid critically, and please, please
please do not say wait and see. Wait and see
is not a strategy. I hate wait and see. It's
not over for me. I'm still deep in the heart
of autism saying is talking a lot, and he's doing
so many things that I'm just so thrilled with and

(11:43):
it's exhausting and it's amazing to see him make the
progress and I have all the hope in the world
for him still, but I know it's not just a marathon.
It's like an ultra marathon, not a sprint. We'll be
back after a quick break. Welcome back to the Healthy

(12:07):
Baby Show. Can we talk about your experience with Jeff
and where he is today, because the story of Jeff
right now is so incredibly inspiring and keeps my hope
alive from my son. So that boy with the nineteen symptoms,
and he was similar to Zane. He regressed, he had

(12:28):
ten words and about twenty words approximated, all of them
are gone within a one month period. And his sleep
became a nightmare. And then explosive diarrhea alternating with vomiting
and constipation. So of those nineteen symptoms we talked about,
there was a lot of stemming, a lot of flapping,

(12:48):
a lot of toe walking, a lot of aggression. Today
he's on his senior year as first choice university, and
he's doing everything he can and meat and chat with girls.
He's out talking to everyone about everything. He's composing music,
he plays three instruments. He loves to write, he loves

(13:10):
to read, he loves to be with his friends. I
would say he's got an extremely bright, fantastic future in
front of him and that's a far cry when we
were first told the autism diagnosis. He's the best version
of me and my husband best version. There are parts

(13:31):
that I would say autism brings out the best and
everyone around them. There's things that I really appreciate about
this journey. Like you said, celebrating every major milestone. That's
really If every parent would do that, I would really
think we'd all have a better outlook. Celebrating, loving, being

(13:52):
thankful for what you have. But that comes from great
adversity and things being taken away and health being deprived.
Even though I love my son and I would have
four thousand of them if I could. He's the best
thing that's ever happened to our family. Lisa, can you
go over the stats of all the families that Taco

(14:13):
works with. What percentage of them see improvement? You know,
might eventually even lose a diagnosis. I think the best
day was January when the National Institutes of Health published
a study that children with autism can recover with proper
medical treatment unique to their needs and therapeutics. That was

(14:38):
a great day to talked about possibilities and whenever I
bring up that study, I think I only meet one
out of a hundred people know that he's even a possibility,
So that studies said ten recover, I think that number
is possibly higher. And the reason why I think it
hires that if more people knew, more people would try.

(14:59):
I do see a lot of kids that get to
a place where they have true independence. I met with
one kid. He just finished college. He's got a job,
but he has a side hustle. He makes his homemade
salsa and sells it to family and friends, and I
buy it from him all the time. And the kid
as cute as can be and doing great. A little quirky,

(15:21):
I'll take that. I'm kind of quirky. So I look
at recovery as a term where that individual no longer
needs any assistance of any kind and is indistinguishable from
their peers. That will always be my north star, and
I feel like even if in my lifetime it doesn't happen,
which I believe it will, because I mean, we have

(15:43):
found a vaccine within a year of COVID starting, I
believe that we will find a number of reliable and
meaningful treatments or therapies in the course of the next
ten and twenty years that will help. Saying and Jeff
and so many of the other kids that are out there.
He's still on a spectrum. But that's that's see. That's

(16:05):
the thing is like, I love neurodiversity, and I love
the idea of all of us having different ways that
our brains work and process information. It makes life richer.
But I don't love it's feeling like my child is
trapped inside of body that doesn't work with him and
doesn't allow him to be independent. That's what I don't love.
I feel like of constant focus on improving and learning

(16:30):
and helping Zane feel more and more comfortable and happy
is a really good pursuit of my time. I'm not
against autism. Let me just be clear. I love our kids.
I love and accept our kids where they are today.
I just have big dreams for where they can be
in the future. You know, non speakers now four times

(16:53):
likely to have g I issues, forty times to die
from wandering or injuries, shorter life expectancy than the rest
of the population, have crippling anxiety, percent of seizures of
sleep issues of adults in the community will have a
paid job. I don't like that stuff. What I don't

(17:16):
like is the bullying. I don't like the crimes. I
don't like what happens to our kids with these health issues.
I would very much like for people to love and
accept who they are for their gifts, because they are
extraordinarily talented and things to give. I want them to
lead beautiful, fulfilling during field lives. I really want that

(17:39):
to be clear. Nerd Diversity is great when it doesn't
come with stuff that stops you from living your full potential.
Of course I agree. Can we step back, what advice
or council would you have given yourself years ago? Because
you've been through so much and you've mentored so many
people through their own very unique and little journeys. I

(18:01):
actually have a blog on that, dear Lisa, and one
of them is, please get a pedicure. Your toes are terrible.
So I would say to a person, don't hold the
steering wheels so tight that you forget and are not
present day to day. You've got to be able to
love and live. Remember you're married. If you've got a

(18:26):
husband or wife out there, remember to love on them
and remember they aren't just annoying and make you frustrated.
Bring them in as part of your team. And for
God's sakes, this was a big mistake for me. If
you have other kids, make sure you make them feel
special now and again. Sometimes all the autism therapy and attention,
it feels like you don't love them as much, and

(18:49):
so please remember to love on them. And I know
that's a lot to juggle, but you've got to find
your cadence and your balance. We'll be back after a
quick break. Welcome back to the Healthy Baby Show. I've

(19:11):
wondered through my own journey. What the future will bring
is more and more parents face this kind of diagnosis.
I know how hard it is, and I also know
that now the parents of one and fifty four babies
are going to get this diagnosis. Why do you think
we find ourselves in a time where autism in America
is affecting one in fifty four children, a d h

(19:32):
D is roughly at least ten, if not more, asthma zema.
Why are all of these things so drastically on the rise.
The way I say it and teach it is the
epidemic of autism, asthma, a d h D, allergies and

(19:53):
autoimmune diseases, and Alzheimer's disease. What do they have in
common is inflammation. Inflammation is the smoke detectors going off
in our world that are houses on fire. Yeah, when
we get the diagnosis, the first thing I was told

(20:14):
to do is to understand that there is this inflammation
underlying autism, and the inflammation in the brain somehow linked
to inflammation in the gut and the digestive system. And
so then I began to unpack that and work with
you and many other specialists to restore zanes microbiome, to

(20:37):
ensure that he was actually getting the nutrition from the
food he was eating, and then to focus on supplementing
areas where there was not balanced. That was one of
the first things. Working with the labs is really empowering
for me because it gives you something to work on
and address. That's right. I predicted in the nineties that

(20:58):
every doctor would have an extensive knowledge base of nutrition
by the year two thousand and Boy was I wrong. Now.
I taught medical students this past year. Every year I
asked them this question. These are fourth thear medical students,
and I asked them, so, tell me how much training
have you had in nutrition? And it's invariably still to

(21:21):
this day. In an hour I could tell you that
my hope for the future is that pediatricians not only
understand and are required to understand how nutrition effects development
and growth, but also how development is something that they
should be more keenly aware of in every single appointment,

(21:43):
regardless of whether or not there's anything quote unquote wrong.
That's right. I don't even want to call it preventative
care anymore. I want to call it proactive care. Preventive
care sounds fear based. We're preventing problems. No, we're optimising
growth and development. But proactive means not getting out of

(22:05):
the room as soon as you walk in the room
to actually spend time seeing the wonder and marvel and
miracle of growth and development happening right before your eyes,
and the way that connects to the future, right the
way the trajectories start laying out tracks of individuality, so

(22:27):
that you see how your daughter's trajectory is different than
your sons. They don't have to be exactly the same.
But that's going against the factory model of medicine that's
been built, the one size fits all model. So we
have to change that, and the best way to do

(22:47):
it at this point in my career after thirty five
years of pediatrics, is the parents are the place to empower? Well,
that's it for our show this week. Next week we'll
be back with diapering and potty training. We're gonna be
talking about all the things parents aren't prepared for the

(23:09):
first time they put a diaper on their child, as
well as why the diapering moment is a missed opportunity
to connect with your baby and support their brain development.
We'll also learn all about the different ways to potty
train your child and how we can do it in
a shame free way that supports their growth wherever they are.
Join us next time. The Healthy Baby Show is a

(23:32):
production of i Heeart podcast network and healthy baby dot Com,
where you can find a new line of the safest
baby essentials. The Healthy Baby Show is hosted by me
shazivs From. Our lead producer is Jennifer Bassett. Executive producers
are Nikki Etre, Anna Stump, Shahsi vas Fram and James Violette.
Mastering and sound designed by Carl Katel and Dan Bowsa,

(23:54):
additional writing and research by Julia Weaver. Our theme music
is by Anna Stump and Hamilton's Lighthouse are additional music
from Blue Dot Sessions
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