Episode Transcript
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Susan Fink (00:09):
Hey, everyone, and
welcome to the rise with the
light podcast. My name is SusanFink and this is my weekly
podcast dedicated to supportingfamilies raising children with
special needs. I'm on a missionto provide hope and positivity
through sharing my personalinsights, stories, mindset
perspectives, and ways tonavigate through this journey.
Let's get started.
(00:46):
Hey everyone, and thank you somuch for joining me today. And
for all of your follows messagesand support, you have no idea
what that means to me, and Ireally appreciate it so much.
Okay, let's get into this. Ifyou listen to the intro, you'll
have heard that I want to keepthese episodes short and
specific. So we're all reallybusy. And I want you to hear
something that may be meaningfulto you helpful and with no
(01:09):
fluff. So here it goes. Today'stopic may be pretty emotional
for me actually thinking aboutit and writing it has taken me
back to when my son wasofficially diagnosed, I'm using
air quotes officially diagnosedand I actually ended up ugly
crying while writing this. And Imay have some tears as I record
(01:30):
this as well.
(04:28):
So I did that. I went to thepediatrician, I went to the
Harbor Regional Center, which isrun through the California
Department of DevelopmentalServices. And he had a variety
of tests that spanned over daysand weeks and just waiting to
get the results back were justreally challenging for me.
And the results ended up beingthat he was on the spectrum. He
(04:52):
has autism and I couldn'tprotect him against this.
So this where the tears come in,you know, it doesn't get any
easier even after years ofworking through all of these
things.
(07:03):
What can you do after you have adiagnosis, the first thing is
not to get stuck in youremotions. I know this is so hard
as a parent, it is reallydifficult to hear that your
child has autism or your childhas another special mean
situation that you are notexpecting. It's really
(07:25):
difficult. But you have to putthose aside. And I'm not saying
to ignore your emotions, butalmost compartmentalize them and
handle them separately. Sositting in guilt, sitting in
anger, sitting in sadness is notgoing to help your child your
child needs you more at thispoint than ever. And this is how
I felt my son needed me at thispoint in his life more than
(07:47):
ever, to start taking action todo something right away for him
to figure out what he needs andget to get that set up. And even
just taking one step at a time.
That would gain the momentum,just one step in front of the
other would gain the momentum.
And again, compartmentalizing,putting away my feelings and not
ignoring them. Because you doneed to handle and deal with
(08:10):
your emotions, butreprioritizing your feelings and
putting a plan into place foryour child. So here's some
things that I did, I had tofigure out navigate and took me
a really long time to try tofigure everything out,
especially in the state ofCalifornia, your state may be
different the resources that youhave available to you, it took
(08:31):
me a while to figure things out.
And again, just like having achild you don't have a manual.
So with autism, there is nomanual, there is no right way or
wrong way to go about anything.
And with autism, it's a hugespectrum. There isn't just one
way of going about it, but thisis what I did. So I took the
diagnosis, and all of theinformation that they provided.
(08:53):
And it is clear that there areareas that he needed help in and
for my son it was speech andlanguage development,
occupational therapy andbehavioral therapy. And once I
knew the areas that he neededhelp in I could work on finding
solutions for him.
I mentioned earlier harborregional center. So Harbor
Regional Center is a regionalcenter in the state of
(09:14):
California, they work under theDepartment of Developmental
Services. So if you're in adifferent state, you can find
local agencies as well thatcould be able to provide
services for you not only thediagnosis, but also different
services that are available tofamilies. with children with
special needs and developmentaldisability. You can find out
more information about yourlocal state agencies at
(09:36):
nasddds.orgI also got my son into a local
school that offered aid andtherapy he needed in going to
that school he had to go aboutadditional tests for them to
also diagnose him. So it's funnyhow these diagnoses just don't
pass from the doctor from theregional center and on to the
school. They all have to dotheir own analysis which is one
of the most frustrating thingsbut it is something you can't
(09:58):
control. So there's no point ingetting upset about it, you just
go through the process of it inorder to figure out what the
support is for your child.
So I also found a localbehavioral therapy clinic for
ABA therapy, applied behavioranalysis therapy. And this would
be services that he wouldreceive to help him with his
(10:21):
behaviors that he wasexperiencing. So your child may
or may not need ABA therapy, butthere are other therapies your
child might need, andresearching the crap out of them
and figuring out what isavailable in your area was
something that I did. And theremay also be weightless for these
services. So make sure that youget onto those waitlist, you
(10:41):
look for other alternatives inyour area. So don't just settle
for one, figure out what otheroptions there are, and get your
child on the waitlist oradvocate as much as you can to
push your child through to thetop of the waitlist. The other
thing is insurance. I didn'tknow that insurance would cover
ABA therapy. And I also was ableto get additional medical
(11:02):
insurance that would cover theentire cost of behavioral
therapy. And this took weeks andweeks and weeks of approval and
documentation. But I pushed Ivocalize my concerns of how long
things are taking I made noise,of course in a nice way, but I
had to be that squeaky wheel tomake things happen. And I spent
hours and hours on the phone, Icompleted tons of documentation
(11:24):
and paperwork in order for myson to get the services and for
insurance to cover that. So makesure you look into your
insurance to see what they willcover for your child's therapy.
I also did my own research Istudied, I figured out what I
could do to help him. I lookedat all of the different services
he was getting, I looked at allof the resources that were
available, I was creating my ownplan as well to supplement what
(11:48):
he was getting.
And on top of that I was alsoreceiving parent training. In
ABA therapy, they often provideParent Training during the
process of you know, figuringout what the programs are and
then supplementing thoseprograms at home outside of
therapy. So I received thatparent training, I took it
seriously. I took notes, I askedquestions, I implemented the
(12:09):
strategies, and I incorporatedthem into our daily lives so
that I could supplement andreinforce what he was learning
in therapy. And you may haveaccess to this. And if you don't
have access to parent training,ask for it. Say something, get
the resources that you can do toimplement these strategies to
help your child and don't beafraid to ask the question.
(12:32):
Don't be afraid to ask forresources. As a matter of fact,
I work with the school and thetherapists versus working
against them. So from myperspective, this is a
partnership. We are all a teamtogether, not me versus them.
But we work together as a team.
And I ask questions I debate, Irequest additional resources.
(12:52):
And I asked for what I can dofor my child to supplement what
they're doing. And this hasreally worked well for us
because he only gets a certainamount of therapy in school and
a certain amount of therapy andbehavioral therapy. But I'm with
him all the time. So I can workon things with him, that
supplement his learning. Andthat just helps him to grow and
(13:13):
to develop and to generalize hisbehaviors and his learning. So
don't be afraid to askquestions. I've also debated
with therapists at school andasked, Hey, is this autism? Or
is this age related? My son isreally little as you know, he's
was diagnosed at three. And forme, I wanted to decipher was
this him being a three year oldor four year old five year old
(13:34):
whatever age that is? Or is thisan autism behavior and a
challenge. So I would ask thosequestions. And I wasn't afraid
to debate and to discuss whatthe result is and what I can do
then to help him.
I also took the time, you know,this kind of gets into looking
now inward, I took the time Imade time, I gave up things that
(13:58):
I wanted to do, so that I couldsupport him so that I could
learn, I needed to prioritizehis needs over mine. And I'm not
saying to completely ignore whatyou want or what your desires
are. But I had to give it up fora while not forever. But I had
to pause everything else in mylife so that I could figure this
out. And this did backfire on mea little bit, which I'll talk
(14:21):
about in another episode andspecifically discussing self
care and self love and somechallenges that I've just been
dealing with, which you may bedealing with too. And I'll talk
about those in a differentepisode. But you know, it is
still worth it for me to havefocused that time and to make
sure I could get things on trackfor my son. And again, this is
(14:42):
not forever This is for a periodof time so that you can figure
out what you need to do to makesure your child is set up for
success.
And the other thing is get help.
Don't be afraid to ask for help.
Don't be afraid to reach out toothers. You know, there are so
many communities of otherparents who are going through
similar things, and don't beafraid to join them and to have
(15:03):
dialogue and connect with otherpeople. And I found groups on
Facebook, I made friends andconnected with other parents who
were in the same therapy as myson at school. You know, get
involved, talk, share, workthings out together and know
that you are not alone throughany of this. And don't isolate
yourself with this, there are somany other people that are
(15:23):
dealing with these challengesand finding your child being
diagnosed, reach out, becauseyou can actually learn from
other people, and you can gethelp from other people too.
The other thing is be patient.
This is really hard for me, I amnot a patient person, especially
when it comes to my child andanything that he needs. So it
took weeks and months to figureall of this out. And I'm talking
(15:47):
like, hey, do this, do that it'ssuper easy. Go check back, check
the box and go research this.
And it's all done. No, that isnot the case. And I don't want
to paint that picture. It reallyhas taken months to figure it
out. I think it took about sixmonths to stacks and stacks of
paperwork, to get everythingkind of working all together at
(16:08):
school at home therapy, my owntherapy that I was doing with my
son, the parent trainingeverything and just in order for
it to start working like a welloiled machine, it took time to
do that. And patience becomesvery important. And the other
side of that is to not give uphope that solutions are coming,
(16:28):
they will come it is a process.
And trust me, it sucks goingthrough that process. And you
can try to do all you can tospeed it up. But in some cases,
it just won't be able to gofaster like things with like
working with the government orworking with insurance. I mean,
those things just will taketime. So realize the things you
can and can't control and focuson what you can control and
(16:49):
don't give up hope and bepatient.
The last two things I willmention here is that I cried
every night. I'm crying rightnow.
You know, as much as I was beingso pragmatic and practical about
(17:10):
what I needed to do to get helpfor my son. I try to never let
him see me cry. So that hedidn't see the frustration, the
frustration beyond belief, withall of the paperwork and tests
that he had to go through all ofthe meetings, where I had to
talk about his challenges overand over again, where I just
(17:32):
wanted to break down. But I didhold it in, I did hold it
together so that I cancompartmentalize those feelings.
But I had to let it out at somepoint, I cried, I screamed in my
pillow, I took up a kickboxingclass so that I could punch
something to get my frustrationsout I you know, I had to let it
out. And that's what I mean,don't ignore those feelings,
(17:55):
compartmentalize them and findthe time to address them. And
like I said, I cried every nightand I still cry. It gets easier,
but it also is still hard at thesame time. And that's okay.
That's a normal, natural humanresponse. And so that's
something that I had to do whenhe was diagnosed and throughout
this whole process of gettinghim support and help. And the
(18:17):
last thing was, mostimportantly, I embrace all of
the amazing moments that he hashad, I have celebrated all his
big and his small wins. I havelaughed with him. We have gone
on adventures together. I talkedto him all the time. Even though
he wasn't talking back to mebecause of his speech and
language delays. He may not evenhave understood anything that I
(18:40):
said, but I still talk to himand wanted him to know that I
was there for him no matter whatI helped him, I would go to
everything with him, I wouldmake sure that he knew mommy was
his biggest cheerleader.
And mommy was his biggestadvocate in that I would do
anything for him to make surethat he saw that he was set up
(19:03):
and had the things that heneeded so that he could thrive,
and that he could continue todevelop in the best way possible
with the most love and carepossible. And no matter what I
was there for him. So the mainthing in all of this is that I
knew my son needed me more thanever. There was no time for this
(19:24):
why this Why me Why himmentality all of this didn't
matter at this moment. It onlywould get me stuck and I needed
to move forward and all thatmattered was how I would help my
son and how I would be a part ofhis journey to help him in the
best way that I could.
(20:00):
We have to be their voice andadvocate for them be the squeaky
wheel. I was told very early on,don't be afraid to be the
squeaky wheel meaning, saysomething. Don't be afraid to
ask questions. Don't be afraidto ask for help ask for
resources, connect with others.
Don't be afraid to do that. Andit doesn't have to be you know,
I hear the word squeaky wheel,it kind of sounds like a
(20:21):
negative connotation. But it canbe a very nice squeaky wheel,
you can be a squeaky wheel. Andstill be nice about it, there is
a way to go about that, to buildrelationships, to build
partnerships with people tobuild your team of people around
you. And don't be afraid to dothat.
And all of these tears back thenand right now, you know, it is
(20:45):
totally worth it. All of thiswork is worth it. And, you know,
I'm just so happy that I'm ableto share this story, and to talk
about it. And I'm just sograteful that I can talk to you
about this. And I hope that thisresonates with you if you feel
like this has helped you or thatthis is meaningful to you, and
(21:05):
you're connected in some way towhat I've said, Tell me about
it. I'm on Instagram, I'm onFacebook, DM me
(@susanfink.rise), send me amessage, let me know that this
was helpful for you. Let me knowthat you found some meaning here
and let me know how you'vehandled your own child's
diagnosis. What did you do, thatmaybe I didn't mention that was
able to help you get through itand to help you provide support
(21:27):
for your child.
So that's it for this episode.
Thank you so much for bearingwith me on those tears earlier.
And I so appreciate youlistening to this podcast and
thank you so much for yoursupport and sharing this podcast
to help others. My mission is tohelp as many people as I can and
I cannot do that without you.
And until next time, Iappreciate I empathize and I am
(21:50):
here for you and we...can dothis.