February 3, 2025 • 38 mins
Hosts Megan (Smallwood) and Patrick (Cadigan) have re-cut their 2022 parent interview with Nick and Remy Nirschl, whose son Rich was preparing to transition out of the school system. The Nirschls share their journey, including Rich's early signs of autism, the challenges of getting a diagnosis, and their experiences with various educational and therapeutic programs. They emphasize the importance of early intervention, the benefits of SSI (Supplemental Security Income), and the decision to pursue self-direction for Rich's post-school life. The conversation highlights the need for parents to start planning early, connect with resources, and seek support from transitional coordinators and other families. Join the conversation!
Episode Keywords:
transition planning, autism diagnosis, special education, vocational skills, ABA therapy, self-direction, SSI (Supplemental Security Income), guardianship, early intervention, community resources, volunteer, educational services, family support, transition meetings
Links:
SSI (page)
SSI (site)
DD (page)
Maryland (specific) Links/Supports:
MD Autism Society (site)
Maryland DDA (site)
Nourishing Journey, Columbia MD (Facebook)
Please note: while the episode audio is generally better than the initial recording, we do recognize there are still some places where it sounds...murky. Sorry about that 😕
To download a copy of a transcript for this episode or any of our previous conversations, click here.
Also visit our Podcast webpage to find links to all of our other discussions; go to www.p2transition.com.
Additional information about post-secondary transition can be found at our website.
The Post-Secondary Transition Podcast Facebook page.
Visit our YouTube Channel to find additional video resources.
Intro/Outro music by AudioCoffee from Pixabay.
Transition music by Joseph McDade from Transistor.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Patrick Cadigan (00:00):
Hey everybody.
(00:00):
So in teacher-world, we're rightat the end of a quarter, which
(00:03):
means that a lot of our time isbeing spent working with our
special educators to do progressnotes. To that end, both Meghan
and I have been consumed withthat, so there won't be a new
discussion this week. However,for the last few weeks, we have
been working on cleaning up andbuilding towards re releasing
(00:26):
our very first parent interviewthat we did back in 2022, long
time. Listeners will rememberthat Nick and Remy Nirschl,
whose son rich, was about totransition out of the school
system, and we had anopportunity to sit down and talk
with them about where thatexperience was up to that point.
(00:48):
Today, the nurses have movedaway from our area, and they are
doing great. The reason that wewanted to work on this interview
again is because, remember, thiswas one of our very first
attempts at talking withfamilies. And over the last
couple of years, we've learnedquite a bit about the process of
(01:11):
putting out discussions, right,the process of building a
podcast. And when we went backand we were listening to that
discussion. It was a really gooddiscussion, but we always felt
like one of the problems was itwas a series of cuts that took
away the family's cadence. Theinformation was still there, but
(01:39):
we never felt like it was reallyin their voice. We went back to
the original, unediteddiscussion, taking all of the
stuff that we've learned overthe last couple of years and re
edited so that it sounds more,in essence, like a genuine
(02:01):
discussion versus a series ofinformational vignettes that
were cut together. So we feelthat this is a much easier
listen in terms ofconversational delivery, and we
hope you think so too. So thisweek, we have our renewed
discussion with the nursers, andwe'll see you back here in two
(02:24):
weeks time with a brand newconversation.
Meghan Smallwood (02:37):
All right.
Well, we are fortunate enough tohave a family with us who is
willing to discuss their pathwith transition. So if you don't
mind going ahead and introducingyourself Mr. And Mrs. Nirschl
and just telling us a little bitof background information about
your son.
Nick Nirschl (02:54):
I am Nick Nirschl.
Remi Nirschl (02:56):
And I'm Remy Nirschl, and we have a son who
is 20 years old. His name isRich, and he goes to a public
day school.
Nick Nirschl (03:08):
So when he was about a year old, he seemed to
be doing pretty well, maturingnormally. And about that time,
Remy seemed to start noticingsome abnormalities, and the
doctor tended to downplay it anddidn't really...
Remi Nirschl (03:30):
He told me, "Oh, we'll just wait and see."
Nick Nirschl (03:34):
So he was a little overhear all, and he started to
have some odd behaviors andthings. And the doctor like,
well, it's just normal.
Remi Nirschl (03:45):
He's a boy, but he was showing symptoms because I
was a social worker working in aday program rehabilitation for
traumatic brain injury, andthere was a section in the
building for early developmentchildren, and I used to see them
walk around and they would havebehaviors like flapping hands,
(04:05):
non verbal. And he was showingthose same symptoms. And I was
getting really nervous. And so Iwent to the doctor and say,
Look, this is what he'sexhibiting. And he just said,
Well, you know, you work at arehab, you're just projecting,
just wait and see. And I say,What do you mean by what age are
(04:26):
you going to review this? And hesaid, Oh, around five years old
is when we will figure this out.
And so we had to just go, we hadan HMO, and this was in the
state of California, by the way,and we had to just pay out of
pocket, go in debt and just geta diagnosis. And in the state of
California, once you got to geta diagnosis, I we contacted
(04:48):
Regional Center. I knew to dothat because I was, I was a
social worker, so, you know, wewe waited for just a few months
compared to. Year, which youhave to wait a long time. And
then we got services. We gotspeech. They were going to hook
us up to an early childhooddevelopment. But at that time,
(05:08):
we had to Nick got a job inMaryland, and so we had to pick
up everything and just startfresh again at the age of still
at the age of two, it was thesame year. And then my rude
awakening was that, "oh my gosh,Maryland is different from
(05:30):
California." We had to wait forservice. Then he, he went to
public school for, you know, allthis time we he's got great
teachers throughout I think wewere blessed to have had some
great teachers along the way. Ofcourse, there was tension back
and forth, but to I think it'sat the collaboration of that
(05:53):
brought some really good goalsand services for him, and now
we're at this point.
Meghan Smallwood (06:03):
And how long was he at the separate day
school? Did he go right into itwhen he started his schooling?
Nick Nirschl (06:09):
No, he started off in a separate school that was
sort of an inclusion program.
That was, how did that work? Itwas...
Remi Nirschl (06:18):
It was Howard County Public School, but they
have the combination is, I thinkit was called MINC EL, MINC P,
which is included the sort oflike the ABA program.
Nick Nirschl (06:29):
And they would try to include him in various
classes throughout the day.
Remi Nirschl (06:34):
They are also allowed to pay for like, 15
hours of ABA intensive therapythat was preschool, once he went
into kindergarten. Up to nowpresent, it was alt-special ed
without in home service.
Meghan Smallwood (06:49):
Right, so that separate day program.
Patrick Cadigan (06:53):
What age did they finally identify your son
with autism; like when did youget the official diagnosis?
Nick Nirschl (07:01):
That was 18 months. So we had gone to a
separate person from UCLA whodid the diagnosis. We were
trying to, trying to get some,you know, go through the regular
doctor, and we did finally gethim to be seen by a sort of
autism specialist who said,yeah, he probably has autism,
but we'll wait until he's five.
That was the one. That's when wesaid we need to get him
(07:23):
diagnosed.
Remi Nirschl (07:26):
And pay out of pocket. You know, first they
ruled out hearing if he is deafbecause he wasn't responding to
his name. So they ruled out,ruled that out. Once the
psychologist did a thoroughevaluation, she Yeah, diagnosed
with autism the age of two.
Nick Nirschl (07:44):
Once we started getting those services, they
were like, Oh, it's so importantthat they get early intensive
therapy. And had we justlistened to the doctor, you
know, we wouldn't have gotten.
Remi Nirschl (07:56):
Just a step back.
This was back in...
Nick Nirschl (07:59):
It was, I guess, was, 2002 / 2003.
Meghan Smallwood (08:02):
So, basically a long 20 years ago.
Remi Nirschl (08:04):
The autism rates were like 1 out of 150 and, now
it's one out of 44 I think...
Meghan Smallwood (08:11):
Yeah.
Remi Nirschl (08:12):
So people are now more aware. Pediatricians are
more you know, are looking intoit now, and if parents have
concerns, they will listen,basically...
Nick Nirschl (08:24):
Yeah. I mean, I feel like we were just at the
cusp of when it was people werestarting to realize it was a
real issue, and there wasstarting to be more awareness of
it, but we hadn't quite gottento the point where we are now.
Patrick Cadigan (08:38):
So as we fast forward now to where your son is
at right now. What does a schoolday look like for him?
Remi Nirschl (08:47):
Well, so we he has to wake up real early in the
morning, at 6 (08:50):
30 to get him fed and ready to go with the bus
picks him up at 7 (08:55):
15 which is really early for him. So that's
been a challenge, and from theschool, once he gets there, they
have the assembly. They do, fromwhat I understand, some
vocational and life skills. Theygo out to the community, maybe
once, or is it once or twice aweek?
Meghan Smallwood (09:14):
Hoping to get back to twice.
Remi Nirschl (09:16):
Yeah. So from there, he comes home around 2:45
and then I get him ready,because he's not done yet. Let
him just do what he needs to do,to rest. And by three o'clock,
his therapist comes. We have anABA therapist. Yes, it funded
through our health insurance.
And from three to six, he'sthere with him doing life
(09:39):
skills, or whatever program thatis being implemented that's
prepared by the BCBA, and thenhis days done after that. So
that's his routine, Mondaythrough Friday.
Meghan Smallwood (09:55):
So very functional, vocational life
skills driven day.
Nick Nirschl (10:00):
And he's in a classroom with four other
children with autism. So it's avery small class size with I
don't know what the ratio is,but I think it's close to one to
one.
Meghan Smallwood (10:12):
Thinking back when that diagnosis was received
and you were planning the nextsteps, did it ever cross your
mind about long term planning.
You know, what's his life goingto look like after school?
Remi Nirschl (10:26):
Yes.
Nick Nirschl (10:27):
Well, yeah, so initially there's the shock,
right? And you start to wonderif you're start to ask those
questions. I think within a yearor two of that kind of got in my
mind. Okay, we'll deal with thatwhen we get to it. Let's just
see, see what we can get him to.
I still had hope that at somepoint he'd be able to be
independent. It's at some pointin his life.
(10:54):
And so my anxiety over thatreally pushed me and maybe a
little bit too hard on theteachers to get the goals, you
know, right, and to make surethat they're meeting the goals,
(11:16):
because I was had that end inmind, like, you know, I wanted
him to be at the point where heis self, functioning, hopefully,
diploma and But then along theway, as we were, you know,
working towards those goals, Iwas noticing maybe that what I
(11:39):
wanted for him at the end,starts changing, like it No, it
depends upon how he'sprogressing. And I had to step
back and say, "Okay, I justgotta just take a deep breath
and just, let's go do Nick'sthing." It's just get him to the
(12:00):
point of what he could do now, Ithink that intensity of where I
wanted him to be, it was sointense that it was, you know, I
just had to let it go and justfocus on the present moment;
where is he now? Where he canmove... I'm sorry.
(12:23):
Yeah, it's funny, because we're,we're kind of the opposite in
how we approach life. I mean, Ithink that happens a lot with
married couples, as you attracttoo. I've always been kind of,
don't I don't spend timeregretting and I kind of deal
with now, but I don't plan forthe future. Remy in school, she
(12:46):
would be if an assignment wasgiven to her that was due six
weeks from now. She needed to doit tonight and and I'd wait
until, like, you know, a coupleweeks before it's due, and then
my daughter would wait until thenight before it's due, but
that's how she kind of herapproach to how to deal with
Richie has always been like, weneed to plan this. We need to
(13:08):
get it going.
Remi Nirschl (13:10):
And I think he kind of taught me along the way
to just relax and follow hislead. And there are moments when
he was just, he's just so happy,you know? It's just happy and
smiling. Um, and so...
Meghan Smallwood (13:32):
That's, that's what you want for your child. Do
you want to see that.
Remi Nirschl (13:36):
That's where people, that's the goal. I want
people's goal is to just behappy, right? He's already
there. He's already there. And Ijust had to umm...
Meghan Smallwood (13:50):
And I see from my because I I know you, and I
see from my side that yourecognize that you know what
makes him happy, and as you'replanning for the future. That's
what you're you're striving for.
And you know, I think you're ona great path, but kind of going
back to that you were, kind ofleading me to that next question
about planning for that postsecondary world, and how you
(14:13):
like to be prepared around whatage did you start doing a little
of that research and starting torecognize, like, Okay, I really
need to see what, what I need todo to get us prepared for 21.
Remi Nirschl (14:32):
At 14 years old, it was in the back of my mind
because I've been going to a lotof the informational meetings
since we came here to Maryland,and so at the age of 14 is when
I did really attend more of themeetings that were provided by
(14:55):
the school by the local HowardCounty Autism Society. And I
would just keep notes. And thenI met several parents along the
way with children that weretransitioning, and I would talk
to them, and they said it tookthem about three years and go to
(15:15):
as many of the transitionmeetings to really get it, to
really understand what what washappening, because the
resources, it's so overwhelming,it's so confusing, that it took
them year after year after yearto finally understand it. That's
what a lot of the parents I'vetalked to have recommended to me
(15:38):
is to charge the age of 16, no14, 15, and 16 try to go to
those meetings year after yearafter year, and then at 16,
that's when you start doing yourresearch, making a plan. 17 is
when you start implementing theplan, and 18 is when you
(16:01):
execute. And so I remember thatjust by talking to parents,
going to those informationalconferences and everything, and
I just kept that in my notes,and that's what I did.
Patrick Cadigan (16:16):
Remy, I do have one question for you, so what
was, did you find thosetransition meetings useful, or
did you find talking to otherparents and families who were
going through the process moreuseful for you?
Remi Nirschl (16:29):
In the beginning, it was the parents, actually the
parents throughout, parentsconnecting with them, connecting
to groups, connecting to theFacebook groups like the Howard
County Autism Society has agroup. One of the parents, she
created a Maryland transitionFacebook group, autism Facebook
(16:52):
group. So I went into that one.
We were both in that one, and Idon't there's another group
called self direction. There's alot there are a lot of
information out there in theinternet, so connecting with
parents is what's vital. Butalso the webinars, the
conferences, were really goodtoo, especially the SSI one that
(17:16):
was really good, because SSI canbe very, very overwhelming, and
there's so much information.
Patrick Cadigan (17:29):
When you say SSI, what is that for?
Remi Nirschl (17:31):
Oh, I'm sorry, it's a Social Security
Supplementary income.
Nick Nirschl (17:37):
So the way I understand it is, so there's
kind of two kinds of socialsecurity, right? There's the SSI
and there's the SSDI. SSI is forpeople who have never really
paid into it. And so a lot ofthe children with disabilities,
our son in particular, were ableto take advantage of once they
(17:58):
turn 18, they they can get amonthly income to basically help
them pay for living expenses.
Remi Nirschl (18:13):
But you have to qualify for that.
Nick Nirschl (18:14):
So there was, there's a process to apply for
it. We definitely took advantageof some of those information
sessions to figure out how toput in the application.
Remi Nirschl (18:26):
Yeah, it's really confusing. The DDA website, the
Developmental Disabilitywebsite, it's so there's so much
information and you just, yeah,that was really, can go down a
rabbit hole with that stilltrying to kind of go through it.
Nick Nirschl (18:48):
I mean, the interesting thing was, like,
once we went, once we got theapplication in for for rich, it
was, it was, it happened rightduring the pandemic, and we
ended up doing a phone call,meeting with the person within
month or two, he was qualified,and he was already receiving
(19:12):
benefits.
Remi Nirschl (19:12):
Yeah and I think we were, he was lucky In that we
happened to work with an SSIrepresentative who was really
very thoughtful and wanted towork with us, because I've heard
stories from other parents thatit took them months to get their
(19:36):
child receiving SSI. We were hewas lucky. We were lucky to have
been paired up with somebody whohelped us through the process.
And it also helped because theAutism Society had had a
conference. They have a yearlyconference with an SSI guru. I
(19:58):
don't, his name is...
Meghan Smallwood (19:59):
Michael Dalto.
Remi Nirschl (20:00):
And he was helpful, because we talked to
him privately, too, for any anytips that he can help us. And he
gave us some really goodinformation.
Nick Nirschl (20:12):
Yeah, he really laid it out exactly what you
have to say and how you....theapplication.
Remi Nirschl (20:18):
I need to point out to parents, which is
important is don't apply the daythey turn 18, wait until the one
month after they turn 18,because if you apply too close
to the date of when they justturned 18, parents income will
be assessed included indetermining whether the child
(20:41):
qualifies, and if you're makinga lot of money, your your child
will get denied. You have towait about a, I would say, about
a month after they turn 18.
Meghan Smallwood (20:52):
And I know the Michael Dalto sessions they did
are on the Howard County AutismSociety web page recorded, so...
Remi Nirschl (20:59):
It was really great.
Meghan Smallwood (21:00):
Yeah, so I was going to ask now that Rich is
20, and this is the year forexit, can you tell us a little
bit what you've been doing toprepare for that?
Remi Nirschl (21:12):
Well, just last year, we went to visit with you
the different day programs. Nickand I really started talking
about, okay, what do we want forhim? What do we see him doing?
Do we want to choose the selfdirection route or the
(21:32):
traditional day program route?
And that was a discussion wehad. I think the pandemic helped
answer that question for us too,because since the pandemic,
there's a lot of day programsthat have been virtual. He
doesn't like virtual. He hatedthe whole virtual more than
that, and so I and there's alsostaffing issues. Currently, I
(21:56):
think we've made a decision togo to the self direction route
for him. And so the planning, weboth have been researching like,
Okay, what is out there in thecommunity that he can
participate in at the level he'sin right now? He would just be
doing volunteer work, because ifhe still has a lot more ways to
(22:20):
go in terms of life skill. Andso prior to that, we before the
pandemic, we had Richie doingvolunteer work once a week at a
really nice like, it's sort oflike a day spa cafe and and the
owner was really nice, and shelet us bring our son, and he
(22:43):
would clean the tables, cleanthe rooms, so he had the
capacity to do that. So we wanthim to be involved in the
community, and so we're lookingfor more resources like that.
Meghan Smallwood (22:59):
Did you go out and make that connection with
the spa? I'm curious how thatstarted.
Remi Nirschl (23:05):
Can I mention, it's a Nourishing Journey. It's
like where I used to work, andthe owner, her name is Jennifer
Palmer. Jennifer has been afriend of mine and has given you
lots of resources over the yearsof how to help my son. And she's
(23:26):
a traditional naturopath. Shewas someone I, you know, had
always like went to for helpwith my son, and so it was
natural. I would go to her andask, "Oh, well, can, can he, you
know, just do some volunteerwork?" And, and she said, Sure!
Meghan Smallwood (23:45):
That's wonderful, yeah, being able to
use the resources that you haveand people that you know in the
community.
Remi Nirschl (23:51):
And, and that's something we'd like for him to
do, as well as continuereceiving some therapy to
improve his life skills. And andso we're still in the process of
trying to determine what his daywould look like, but we have a
general idea of what that is. Sovolunteer work, continue with
(24:12):
some therapy and...
Nick Nirschl (24:15):
Yeah, I mean, if things work out, it'd be good
for him to do go to a dateprogram, part time. That's a
that's always tricky, because alot of them don't do the part
time...
Remi Nirschl (24:27):
Yeah.
Nick Nirschl (24:27):
...we're still working on that.
Remi Nirschl (24:28):
Yeah, well, we'll see where ditch will take us.
Meghan Smallwood (24:33):
Yep, we will go explore again. So I wanted to
jump back, you had mentionedabout considering self direction
for Rich after exit. Do you mindexplaining a little bit about
what self direction is?
Remi Nirschl (24:48):
My understanding of self direction is that
there's always that I have to doit a comparison to the
traditional. The traditional iswhere the agency. You choose,
makes all the decision regardingwhat kind of his day would look
like as he enters into the dayprogram. So they do the setup,
(25:10):
and they will whatever lessonsor outings they make, the
decision versus self direction,where the caregiver parents with
our son, create the day for himwhat his day would look like. We
make that determination so thathe has more flexibility and
(25:33):
really what he wants to do.
Nick Nirschl (25:35):
Right and so, so when, when you go with an
agency, they tend to say, Okay,this is the day program he's
going to. So he's going to go tothat one day program, and he's
going to be full time at thatday program, whereas with self
direction, you can kind of say,well, he will do some days at
this day program, and then he'lldo some days where you can maybe
have him go to the gym or doother things, the other
(25:57):
activities, or volunteer forplaces. So there's a little more
flexibility, but at the sametime, you have to hire people,
so that there's going to besomebody who's going to manage
the money, I forget what that'scalled, and there's going to be
somebody who maybe works withhim as a one on one, that works
with and so the parent is thengoing to be responsible for
(26:17):
hiring all those people. Sothere's more responsibility on
the on the parents.
Meghan Smallwood (26:22):
And I know a lot of parents, it's nice
though. If, for example, yourson is sleepier in the morning
and can't get up, you can planhis day to start in the
afternoon. So it works betterfor those who need that
flexibility, or if they wake upand they're not having a great
day, you don't have toconstantly call up an agency to
say he can't come in today. Youjust take it as it comes. So
(26:45):
there's definitely pros andcons, and it's individualized.
Remi Nirschl (26:49):
There's a parent who helped me really, kind of
really think through this,because I was debating which
maybe the traditional routewould be better, versus the self
direction. Because I I'moverwhelmed, I'm tired and but
then I had she helped me focus.
Well, you know, what do you youhave to focus on your son and
what he want? And to be honest,well, I'm watching him through
(27:11):
the summer and all last year, itwas hard for him. It's hard for
him to go to school now and wakeup so early in the morning and
and is this what he's gonna dofor the rest of his life? You
know, go to like a school, likesetting, if you are a neuro
typical child, that's not, youknow, I don't know anybody who
(27:34):
would want to go to school forthe rest for their life, in
terms of flexibility. Whenpeople want flexibility, right?
They want to have voices. Thatis something my son has to have.
He wants a choice. Even thoughhe's non verbal, he's he's
making it known to me nowthrough other means of what he
(27:56):
wants.
Meghan Smallwood (27:59):
Absolutely.
Remi Nirschl (28:00):
Yeah, and I could tell, and I'm willing to do
that. We were willing to dothat, to set it up for him.
Patrick Cadigan (28:08):
Throughout this whole process, I'm sure that you
that there has been a lot ofresearch that has been involved.
How do you determine what is auseful resource versus not
useful?
Remi Nirschl (28:21):
That's a good question. I'm still sifting at
what is good and what's notgood, and research is the
computer and Google and Meghan,parents and...It that's a good
question. I mean, that's areally good question. What is
an...
Nick Nirschl (28:41):
Good resource.
Meghan Smallwood (28:42):
Yes.
Remi Nirschl (28:42):
Good resources versus...
Less useful.
Yeah, less useful. So it's it'sa matter of, first of all,
taking deep breath, learning,acknowledging your anxiety. You
have to deal with your feelings,because the feelings that you
have will block you from reallyseeing the information or
(29:04):
reading the information, and Ihad to just kind of step aside
and do some gardening or listento music, instead of staring at
the computer and readingeverything, because my mind was
just becoming jumbled. It washard for me. And I love to do
research, right? I love to dothat and but because it's my
(29:27):
son, the emotions of that wasgetting in the way, I had to
step back and do what I need todo to to take care of myself,
and then go back into theresearch, connecting with with
the families, other families,with the Autism Society, with
you Meghan, with looking at theDA website, putting it all
(29:51):
together, and then I can seemore clearly what is a useful
information. And that reallydepends on. The individual, I
can't tell a person was usefulto them and what's useful to me?
I mean, I think the key to tothat question of what's useful
(30:12):
is first, you have to know whereyou are, emotionally, mentally
and spiritually before you couldeven read the information,
what's in front of you.
Meghan Smallwood (30:25):
I've always wondered, too, with parents,
when you are doing the research,what do you find the most useful
in terms of, like, the format ofthe information, because there's
so many pages you could justscroll. Do you like when it's
broken down like bullets? Do youlike having a visual timeline?
Do you prefer, like, here's alink, click on that. Here's
another click on that. I mean,I'm just always wondered what's
the easiest way for parents tobe able to digest it?
Remi Nirschl (30:50):
Question and answer.
Meghan Smallwood (30:52):
Question and answer.
Remi Nirschl (30:53):
How do you go through SSI? And then here's the
steps to do it.
Meghan Smallwood (30:59):
And what does this mean, and who is this and
that like, okay,
Remi Nirschl (31:04):
Also, I found a page in the DDA with acronyms,
because there's, like, so manyacronyms out there that being
tossed out that they know, butparents like us don't know.
Right? You mean FMS? What do youmean? SSI. SSI, I stumbled into
(31:26):
that one. Nobody told me aboutit. I just stumbled. Oh, here it
is. That's a good one.
Patrick Cadigan (31:33):
In the process, as you guys have gone through
it, was there anything that wasless difficult to do than you
actually thought it might be.
Meghan Smallwood (31:42):
Sounds like SSI was,
Remi Nirschl (31:45):
Yeah, that was, and we also went through
guardianship...
Nick Nirschl (31:50):
Right, so...
Remi Nirschl (31:50):
The thought of guardianship was overwhelming
and scary, but when we plan toout what are the steps we need
to do, okay? This is what I needto do, implement and then
execute.
Patrick Cadigan (32:07):
When you talk about guardianship, what do you
mean?
Nick Nirschl (32:10):
So when a child becomes an adult at the age of
18, in theory, they are now thedecision maker, and their
parents can't do things for themwithout them giving giving
approval. And so for our childin particular, he's not capable
of making those decisions. Andso certain children with
(32:32):
disabilities might have thatissue. Guardianship is just a
legal process where the courtsays, yes, the child is not
capable of making thosedecisions. And so somebody it
could be a parent, or it couldbe somebody else is the guardian
of that individual and isbasically the person who signs
(32:53):
off on decisions, medicaldecisions and other things.
Remi Nirschl (32:58):
So for some parents, this may not be an
obvious route, because yourchild may be higher functioning,
and it's a decision that theyhave to make whether, if this is
something that they will gothrough, because you don't have
to go through it. But for ourson, it was obvious.
Nick Nirschl (33:16):
Right and I can imagine that there's like some
some line where kids probablyfall like they can make
decisions in certain cases, butin other cases they can't, and
so it's a more difficultdecision to make, as we said for
our in our case, it was prettyobvious.
Meghan Smallwood (33:34):
Yeah, it's a very individualized decision.
And there's other alternativesto guardianship too, which I'm
sure we're going to talk aboutin a different podcast, but...
Patrick Cadigan (33:43):
As we've navigated through this
conversation, I've heard youguys talk about several things
that would be helpful for otherparents. Is there, is there one
thing that you're thinking aboutnow that you just kind of look
back and say, oh, man, I wish Iknew that, or a particular
resource?
Nick Nirschl (34:04):
Yeah, I'm not sure that we have that like...
Meghan Smallwood (34:07):
I think what I've heard is starting early is
key, and doing the research,because I know you both have put
the work in since he was 14, andyou know, been going to the
sessions and having meetings,and you're really dedicated to
the vision you you want for richand what he would be happiest
doing, so...
Remi Nirschl (34:28):
I would say to the parents whose children are in
the school system, reach out toyour transitional coordinator,
like Meghan, she is my son'stransitional coordinator, and
I'm really grateful, because, Imean, you have been so helpful.
I mean, I said, Oh, can I emailyou over the summer, sure, yeah.
(34:49):
And I made sure that I didn't,because I would needed to give
you a break.
Nick Nirschl (34:54):
Yeah. And a lot of it is like, you run into certain
people who are are reallyhelpful, and then you stick. At
them, and some people are less,less responsive than others, and
so you just have to find theright people and...
Remi Nirschl (35:06):
I feel I find it that people are generally
helpful. I think Richie has beenblessed to have been with the
teachers he's had and the peoplehe's connected with. I mean,
he's just pretty much kind ofled us to finding really good
resources. I don't knowsomething about my son that's
just, ummm...
Nick Nirschl (35:27):
Yeah, it's funny, because he has that personality,
like when he's when he's indistress, it's really difficult
to deal with, but when he'shappy, he tends to attract
people who want to help, becausehe's just got that personality.
Remi Nirschl (35:41):
And I say to parents, people generally do
want to help. I think sometimesour anxiety gets in the way of
seeing that, but there arepeople that are out there that
are willing to help parents likeus. I mean, I found that to be
true so...
Patrick Cadigan (35:58):
Well. I think that that is a very positive
note to end on. Meghan, that wasthat was really cool.
Meghan Smallwood (36:14):
Yeah.
Patrick Cadigan (36:14):
I was glad we could talk with them. Well,
thank you. Thank you. Thank youto the Nirschl's one more time
for sitting down with us, takingtime out of their day, and we
were going to do more.
Meghan Smallwood (36:24):
Yep.
Patrick Cadigan (36:25):
We already have a list of people that we'd
really like to talk to and butwe're at the end of our episode,
man, we made it again.
Meghan Smallwood (36:31):
Yeah.
Patrick Cadigan (36:32):
Good deal.
Meghan Smallwood (36:33):
As always, you'll find links to the
information from ourconversations in our show notes.
We would love for theinformation from this and all
our other discussions to reachas many families as possible,
and we need your help to dothat. You can find our
conversations at www, dot P,twotransition.com, like, follow,
share out the podcast. Ourconversations are posted to all
(36:56):
the major platforms, includingApple podcasts, Spotify, YouTube
music, and that's just naming afew. So please share and share
often.
Patrick Cadigan (37:06):
Please check out our YouTube channel. We've
done some of the legwork for youby curating videos of topics
that revolve around transition.
We have playlists forguardianship, alternatives to
guardianship ABLE accounts, andthere's more to come. So please
be sure to subscribe there aswell. And finally, check out our
website, which is full ofinformation and links to
resources around the transitionprocess. Open your web browser
(37:27):
of choice and surf towww.postsecondarytransition.com
we thank you so much for thetime that you've spent with us,
and look forward to talkingagain soon.
Hey everybody.
(00:00):
So in teacher-world, we're rightat the end of a quarter, which
(00:03):
means that a lot of our time isbeing spent working with our
special educators to do progressnotes. To that end, both Meghan
and I have been consumed withthat, so there won't be a new
discussion this week. However,for the last few weeks, we have
been working on cleaning up andbuilding towards re releasing
(00:26):
our very first parent interviewthat we did back in 2022, long
time. Listeners will rememberthat Nick and Remy Nirschl,
whose son rich, was about totransition out of the school
system, and we had anopportunity to sit down and talk
with them about where thatexperience was up to that point.
(00:48):
Today, the nurses have movedaway from our area, and they are
doing great. The reason that wewanted to work on this interview
again is because, remember, thiswas one of our very first
attempts at talking withfamilies. And over the last
couple of years, we've learnedquite a bit about the process of
(01:11):
putting out discussions, right,the process of building a
podcast. And when we went backand we were listening to that
discussion. It was a really gooddiscussion, but we always felt
like one of the problems was itwas a series of cuts that took
away the family's cadence. Theinformation was still there, but
(01:39):
we never felt like it was reallyin their voice. We went back to
the original, unediteddiscussion, taking all of the
stuff that we've learned overthe last couple of years and re
edited so that it sounds more,in essence, like a genuine
(02:01):
discussion versus a series ofinformational vignettes that
were cut together. So we feelthat this is a much easier
listen in terms ofconversational delivery, and we
hope you think so too. So thisweek, we have our renewed
discussion with the nursers, andwe'll see you back here in two
(02:24):
weeks time with a brand newconversation.
Meghan Smallwood (02:37):
All right.
Well, we are fortunate enough tohave a family with us who is
willing to discuss their pathwith transition. So if you don't
mind going ahead and introducingyourself Mr. And Mrs. Nirschl
and just telling us a little bitof background information about
your son.
Nick Nirschl (02:54):
I am Nick Nirschl.
Remi Nirschl (02:56):
And I'm Remy Nirschl, and we have a son who
is 20 years old. His name isRich, and he goes to a public
day school.
Nick Nirschl (03:08):
So when he was about a year old, he seemed to
be doing pretty well, maturingnormally. And about that time,
Remy seemed to start noticingsome abnormalities, and the
doctor tended to downplay it anddidn't really...
Remi Nirschl (03:30):
He told me, "Oh, we'll just wait and see."
Nick Nirschl (03:34):
So he was a little overhear all, and he started to
have some odd behaviors andthings. And the doctor like,
well, it's just normal.
Remi Nirschl (03:45):
He's a boy, but he was showing symptoms because I
was a social worker working in aday program rehabilitation for
traumatic brain injury, andthere was a section in the
building for early developmentchildren, and I used to see them
walk around and they would havebehaviors like flapping hands,
(04:05):
non verbal. And he was showingthose same symptoms. And I was
getting really nervous. And so Iwent to the doctor and say,
Look, this is what he'sexhibiting. And he just said,
Well, you know, you work at arehab, you're just projecting,
just wait and see. And I say,What do you mean by what age are
(04:26):
you going to review this? And hesaid, Oh, around five years old
is when we will figure this out.
And so we had to just go, we hadan HMO, and this was in the
state of California, by the way,and we had to just pay out of
pocket, go in debt and just geta diagnosis. And in the state of
California, once you got to geta diagnosis, I we contacted
(04:48):
Regional Center. I knew to dothat because I was, I was a
social worker, so, you know, wewe waited for just a few months
compared to. Year, which youhave to wait a long time. And
then we got services. We gotspeech. They were going to hook
us up to an early childhooddevelopment. But at that time,
(05:08):
we had to Nick got a job inMaryland, and so we had to pick
up everything and just startfresh again at the age of still
at the age of two, it was thesame year. And then my rude
awakening was that, "oh my gosh,Maryland is different from
(05:30):
California." We had to wait forservice. Then he, he went to
public school for, you know, allthis time we he's got great
teachers throughout I think wewere blessed to have had some
great teachers along the way. Ofcourse, there was tension back
and forth, but to I think it'sat the collaboration of that
(05:53):
brought some really good goalsand services for him, and now
we're at this point.
Meghan Smallwood (06:03):
And how long was he at the separate day
school? Did he go right into itwhen he started his schooling?
Nick Nirschl (06:09):
No, he started off in a separate school that was
sort of an inclusion program.
That was, how did that work? Itwas...
Remi Nirschl (06:18):
It was Howard County Public School, but they
have the combination is, I thinkit was called MINC EL, MINC P,
which is included the sort oflike the ABA program.
Nick Nirschl (06:29):
And they would try to include him in various
classes throughout the day.
Remi Nirschl (06:34):
They are also allowed to pay for like, 15
hours of ABA intensive therapythat was preschool, once he went
into kindergarten. Up to nowpresent, it was alt-special ed
without in home service.
Meghan Smallwood (06:49):
Right, so that separate day program.
Patrick Cadigan (06:53):
What age did they finally identify your son
with autism; like when did youget the official diagnosis?
Nick Nirschl (07:01):
That was 18 months. So we had gone to a
separate person from UCLA whodid the diagnosis. We were
trying to, trying to get some,you know, go through the regular
doctor, and we did finally gethim to be seen by a sort of
autism specialist who said,yeah, he probably has autism,
but we'll wait until he's five.
That was the one. That's when wesaid we need to get him
(07:23):
diagnosed.
Remi Nirschl (07:26):
And pay out of pocket. You know, first they
ruled out hearing if he is deafbecause he wasn't responding to
his name. So they ruled out,ruled that out. Once the
psychologist did a thoroughevaluation, she Yeah, diagnosed
with autism the age of two.
Nick Nirschl (07:44):
Once we started getting those services, they
were like, Oh, it's so importantthat they get early intensive
therapy. And had we justlistened to the doctor, you
know, we wouldn't have gotten.
Remi Nirschl (07:56):
Just a step back.
This was back in...
Nick Nirschl (07:59):
It was, I guess, was, 2002 / 2003.
Meghan Smallwood (08:02):
So, basically a long 20 years ago.
Remi Nirschl (08:04):
The autism rates were like 1 out of 150 and, now
it's one out of 44 I think...
Meghan Smallwood (08:11):
Yeah.
Remi Nirschl (08:12):
So people are now more aware. Pediatricians are
more you know, are looking intoit now, and if parents have
concerns, they will listen,basically...
Nick Nirschl (08:24):
Yeah. I mean, I feel like we were just at the
cusp of when it was people werestarting to realize it was a
real issue, and there wasstarting to be more awareness of
it, but we hadn't quite gottento the point where we are now.
Patrick Cadigan (08:38):
So as we fast forward now to where your son is
at right now. What does a schoolday look like for him?
Remi Nirschl (08:47):
Well, so we he has to wake up real early in the
morning, at 6 (08:50):
30 to get him fed and ready to go with the bus
picks him up at 7 (08:55):
15 which is really early for him. So that's
been a challenge, and from theschool, once he gets there, they
have the assembly. They do, fromwhat I understand, some
vocational and life skills. Theygo out to the community, maybe
once, or is it once or twice aweek?
Meghan Smallwood (09:14):
Hoping to get back to twice.
Remi Nirschl (09:16):
Yeah. So from there, he comes home around 2:45
and then I get him ready,because he's not done yet. Let
him just do what he needs to do,to rest. And by three o'clock,
his therapist comes. We have anABA therapist. Yes, it funded
through our health insurance.
And from three to six, he'sthere with him doing life
(09:39):
skills, or whatever program thatis being implemented that's
prepared by the BCBA, and thenhis days done after that. So
that's his routine, Mondaythrough Friday.
Meghan Smallwood (09:55):
So very functional, vocational life
skills driven day.
Nick Nirschl (10:00):
And he's in a classroom with four other
children with autism. So it's avery small class size with I
don't know what the ratio is,but I think it's close to one to
one.
Meghan Smallwood (10:12):
Thinking back when that diagnosis was received
and you were planning the nextsteps, did it ever cross your
mind about long term planning.
You know, what's his life goingto look like after school?
Remi Nirschl (10:26):
Yes.
Nick Nirschl (10:27):
Well, yeah, so initially there's the shock,
right? And you start to wonderif you're start to ask those
questions. I think within a yearor two of that kind of got in my
mind. Okay, we'll deal with thatwhen we get to it. Let's just
see, see what we can get him to.
I still had hope that at somepoint he'd be able to be
independent. It's at some pointin his life.
(10:54):
And so my anxiety over thatreally pushed me and maybe a
little bit too hard on theteachers to get the goals, you
know, right, and to make surethat they're meeting the goals,
(11:16):
because I was had that end inmind, like, you know, I wanted
him to be at the point where heis self, functioning, hopefully,
diploma and But then along theway, as we were, you know,
working towards those goals, Iwas noticing maybe that what I
(11:39):
wanted for him at the end,starts changing, like it No, it
depends upon how he'sprogressing. And I had to step
back and say, "Okay, I justgotta just take a deep breath
and just, let's go do Nick'sthing." It's just get him to the
(12:00):
point of what he could do now, Ithink that intensity of where I
wanted him to be, it was sointense that it was, you know, I
just had to let it go and justfocus on the present moment;
where is he now? Where he canmove... I'm sorry.
(12:23):
Yeah, it's funny, because we're,we're kind of the opposite in
how we approach life. I mean, Ithink that happens a lot with
married couples, as you attracttoo. I've always been kind of,
don't I don't spend timeregretting and I kind of deal
with now, but I don't plan forthe future. Remy in school, she
(12:46):
would be if an assignment wasgiven to her that was due six
weeks from now. She needed to doit tonight and and I'd wait
until, like, you know, a coupleweeks before it's due, and then
my daughter would wait until thenight before it's due, but
that's how she kind of herapproach to how to deal with
Richie has always been like, weneed to plan this. We need to
(13:08):
get it going.
Remi Nirschl (13:10):
And I think he kind of taught me along the way
to just relax and follow hislead. And there are moments when
he was just, he's just so happy,you know? It's just happy and
smiling. Um, and so...
Meghan Smallwood (13:32):
That's, that's what you want for your child. Do
you want to see that.
Remi Nirschl (13:36):
That's where people, that's the goal. I want
people's goal is to just behappy, right? He's already
there. He's already there. And Ijust had to umm...
Meghan Smallwood (13:50):
And I see from my because I I know you, and I
see from my side that yourecognize that you know what
makes him happy, and as you'replanning for the future. That's
what you're you're striving for.
And you know, I think you're ona great path, but kind of going
back to that you were, kind ofleading me to that next question
about planning for that postsecondary world, and how you
(14:13):
like to be prepared around whatage did you start doing a little
of that research and starting torecognize, like, Okay, I really
need to see what, what I need todo to get us prepared for 21.
Remi Nirschl (14:32):
At 14 years old, it was in the back of my mind
because I've been going to a lotof the informational meetings
since we came here to Maryland,and so at the age of 14 is when
I did really attend more of themeetings that were provided by
(14:55):
the school by the local HowardCounty Autism Society. And I
would just keep notes. And thenI met several parents along the
way with children that weretransitioning, and I would talk
to them, and they said it tookthem about three years and go to
(15:15):
as many of the transitionmeetings to really get it, to
really understand what what washappening, because the
resources, it's so overwhelming,it's so confusing, that it took
them year after year after yearto finally understand it. That's
what a lot of the parents I'vetalked to have recommended to me
(15:38):
is to charge the age of 16, no14, 15, and 16 try to go to
those meetings year after yearafter year, and then at 16,
that's when you start doing yourresearch, making a plan. 17 is
when you start implementing theplan, and 18 is when you
(16:01):
execute. And so I remember thatjust by talking to parents,
going to those informationalconferences and everything, and
I just kept that in my notes,and that's what I did.
Patrick Cadigan (16:16):
Remy, I do have one question for you, so what
was, did you find thosetransition meetings useful, or
did you find talking to otherparents and families who were
going through the process moreuseful for you?
Remi Nirschl (16:29):
In the beginning, it was the parents, actually the
parents throughout, parentsconnecting with them, connecting
to groups, connecting to theFacebook groups like the Howard
County Autism Society has agroup. One of the parents, she
created a Maryland transitionFacebook group, autism Facebook
(16:52):
group. So I went into that one.
We were both in that one, and Idon't there's another group
called self direction. There's alot there are a lot of
information out there in theinternet, so connecting with
parents is what's vital. Butalso the webinars, the
conferences, were really goodtoo, especially the SSI one that
(17:16):
was really good, because SSI canbe very, very overwhelming, and
there's so much information.
Patrick Cadigan (17:29):
When you say SSI, what is that for?
Remi Nirschl (17:31):
Oh, I'm sorry, it's a Social Security
Supplementary income.
Nick Nirschl (17:37):
So the way I understand it is, so there's
kind of two kinds of socialsecurity, right? There's the SSI
and there's the SSDI. SSI is forpeople who have never really
paid into it. And so a lot ofthe children with disabilities,
our son in particular, were ableto take advantage of once they
(17:58):
turn 18, they they can get amonthly income to basically help
them pay for living expenses.
Remi Nirschl (18:13):
But you have to qualify for that.
Nick Nirschl (18:14):
So there was, there's a process to apply for
it. We definitely took advantageof some of those information
sessions to figure out how toput in the application.
Remi Nirschl (18:26):
Yeah, it's really confusing. The DDA website, the
Developmental Disabilitywebsite, it's so there's so much
information and you just, yeah,that was really, can go down a
rabbit hole with that stilltrying to kind of go through it.
Nick Nirschl (18:48):
I mean, the interesting thing was, like,
once we went, once we got theapplication in for for rich, it
was, it was, it happened rightduring the pandemic, and we
ended up doing a phone call,meeting with the person within
month or two, he was qualified,and he was already receiving
(19:12):
benefits.
Remi Nirschl (19:12):
Yeah and I think we were, he was lucky In that we
happened to work with an SSIrepresentative who was really
very thoughtful and wanted towork with us, because I've heard
stories from other parents thatit took them months to get their
(19:36):
child receiving SSI. We were hewas lucky. We were lucky to have
been paired up with somebody whohelped us through the process.
And it also helped because theAutism Society had had a
conference. They have a yearlyconference with an SSI guru. I
(19:58):
don't, his name is...
Meghan Smallwood (19:59):
Michael Dalto.
Remi Nirschl (20:00):
And he was helpful, because we talked to
him privately, too, for any anytips that he can help us. And he
gave us some really goodinformation.
Nick Nirschl (20:12):
Yeah, he really laid it out exactly what you
have to say and how you....theapplication.
Remi Nirschl (20:18):
I need to point out to parents, which is
important is don't apply the daythey turn 18, wait until the one
month after they turn 18,because if you apply too close
to the date of when they justturned 18, parents income will
be assessed included indetermining whether the child
(20:41):
qualifies, and if you're makinga lot of money, your your child
will get denied. You have towait about a, I would say, about
a month after they turn 18.
Meghan Smallwood (20:52):
And I know the Michael Dalto sessions they did
are on the Howard County AutismSociety web page recorded, so...
Remi Nirschl (20:59):
It was really great.
Meghan Smallwood (21:00):
Yeah, so I was going to ask now that Rich is
20, and this is the year forexit, can you tell us a little
bit what you've been doing toprepare for that?
Remi Nirschl (21:12):
Well, just last year, we went to visit with you
the different day programs. Nickand I really started talking
about, okay, what do we want forhim? What do we see him doing?
Do we want to choose the selfdirection route or the
(21:32):
traditional day program route?
And that was a discussion wehad. I think the pandemic helped
answer that question for us too,because since the pandemic,
there's a lot of day programsthat have been virtual. He
doesn't like virtual. He hatedthe whole virtual more than
that, and so I and there's alsostaffing issues. Currently, I
(21:56):
think we've made a decision togo to the self direction route
for him. And so the planning, weboth have been researching like,
Okay, what is out there in thecommunity that he can
participate in at the level he'sin right now? He would just be
doing volunteer work, because ifhe still has a lot more ways to
(22:20):
go in terms of life skill. Andso prior to that, we before the
pandemic, we had Richie doingvolunteer work once a week at a
really nice like, it's sort oflike a day spa cafe and and the
owner was really nice, and shelet us bring our son, and he
(22:43):
would clean the tables, cleanthe rooms, so he had the
capacity to do that. So we wanthim to be involved in the
community, and so we're lookingfor more resources like that.
Meghan Smallwood (22:59):
Did you go out and make that connection with
the spa? I'm curious how thatstarted.
Remi Nirschl (23:05):
Can I mention, it's a Nourishing Journey. It's
like where I used to work, andthe owner, her name is Jennifer
Palmer. Jennifer has been afriend of mine and has given you
lots of resources over the yearsof how to help my son. And she's
(23:26):
a traditional naturopath. Shewas someone I, you know, had
always like went to for helpwith my son, and so it was
natural. I would go to her andask, "Oh, well, can, can he, you
know, just do some volunteerwork?" And, and she said, Sure!
Meghan Smallwood (23:45):
That's wonderful, yeah, being able to
use the resources that you haveand people that you know in the
community.
Remi Nirschl (23:51):
And, and that's something we'd like for him to
do, as well as continuereceiving some therapy to
improve his life skills. And andso we're still in the process of
trying to determine what his daywould look like, but we have a
general idea of what that is. Sovolunteer work, continue with
(24:12):
some therapy and...
Nick Nirschl (24:15):
Yeah, I mean, if things work out, it'd be good
for him to do go to a dateprogram, part time. That's a
that's always tricky, because alot of them don't do the part
time...
Remi Nirschl (24:27):
Yeah.
Nick Nirschl (24:27):
...we're still working on that.
Remi Nirschl (24:28):
Yeah, well, we'll see where ditch will take us.
Meghan Smallwood (24:33):
Yep, we will go explore again. So I wanted to
jump back, you had mentionedabout considering self direction
for Rich after exit. Do you mindexplaining a little bit about
what self direction is?
Remi Nirschl (24:48):
My understanding of self direction is that
there's always that I have to doit a comparison to the
traditional. The traditional iswhere the agency. You choose,
makes all the decision regardingwhat kind of his day would look
like as he enters into the dayprogram. So they do the setup,
(25:10):
and they will whatever lessonsor outings they make, the
decision versus self direction,where the caregiver parents with
our son, create the day for himwhat his day would look like. We
make that determination so thathe has more flexibility and
(25:33):
really what he wants to do.
Nick Nirschl (25:35):
Right and so, so when, when you go with an
agency, they tend to say, Okay,this is the day program he's
going to. So he's going to go tothat one day program, and he's
going to be full time at thatday program, whereas with self
direction, you can kind of say,well, he will do some days at
this day program, and then he'lldo some days where you can maybe
have him go to the gym or doother things, the other
(25:57):
activities, or volunteer forplaces. So there's a little more
flexibility, but at the sametime, you have to hire people,
so that there's going to besomebody who's going to manage
the money, I forget what that'scalled, and there's going to be
somebody who maybe works withhim as a one on one, that works
with and so the parent is thengoing to be responsible for
(26:17):
hiring all those people. Sothere's more responsibility on
the on the parents.
Meghan Smallwood (26:22):
And I know a lot of parents, it's nice
though. If, for example, yourson is sleepier in the morning
and can't get up, you can planhis day to start in the
afternoon. So it works betterfor those who need that
flexibility, or if they wake upand they're not having a great
day, you don't have toconstantly call up an agency to
say he can't come in today. Youjust take it as it comes. So
(26:45):
there's definitely pros andcons, and it's individualized.
Remi Nirschl (26:49):
There's a parent who helped me really, kind of
really think through this,because I was debating which
maybe the traditional routewould be better, versus the self
direction. Because I I'moverwhelmed, I'm tired and but
then I had she helped me focus.
Well, you know, what do you youhave to focus on your son and
what he want? And to be honest,well, I'm watching him through
(27:11):
the summer and all last year, itwas hard for him. It's hard for
him to go to school now and wakeup so early in the morning and
and is this what he's gonna dofor the rest of his life? You
know, go to like a school, likesetting, if you are a neuro
typical child, that's not, youknow, I don't know anybody who
(27:34):
would want to go to school forthe rest for their life, in
terms of flexibility. Whenpeople want flexibility, right?
They want to have voices. Thatis something my son has to have.
He wants a choice. Even thoughhe's non verbal, he's he's
making it known to me nowthrough other means of what he
(27:56):
wants.
Meghan Smallwood (27:59):
Absolutely.
Remi Nirschl (28:00):
Yeah, and I could tell, and I'm willing to do
that. We were willing to dothat, to set it up for him.
Patrick Cadigan (28:08):
Throughout this whole process, I'm sure that you
that there has been a lot ofresearch that has been involved.
How do you determine what is auseful resource versus not
useful?
Remi Nirschl (28:21):
That's a good question. I'm still sifting at
what is good and what's notgood, and research is the
computer and Google and Meghan,parents and...It that's a good
question. I mean, that's areally good question. What is
an...
Nick Nirschl (28:41):
Good resource.
Meghan Smallwood (28:42):
Yes.
Remi Nirschl (28:42):
Good resources versus...
Less useful.
Yeah, less useful. So it's it'sa matter of, first of all,
taking deep breath, learning,acknowledging your anxiety. You
have to deal with your feelings,because the feelings that you
have will block you from reallyseeing the information or
(29:04):
reading the information, and Ihad to just kind of step aside
and do some gardening or listento music, instead of staring at
the computer and readingeverything, because my mind was
just becoming jumbled. It washard for me. And I love to do
research, right? I love to dothat and but because it's my
(29:27):
son, the emotions of that wasgetting in the way, I had to
step back and do what I need todo to to take care of myself,
and then go back into theresearch, connecting with with
the families, other families,with the Autism Society, with
you Meghan, with looking at theDA website, putting it all
(29:51):
together, and then I can seemore clearly what is a useful
information. And that reallydepends on. The individual, I
can't tell a person was usefulto them and what's useful to me?
I mean, I think the key to tothat question of what's useful
(30:12):
is first, you have to know whereyou are, emotionally, mentally
and spiritually before you couldeven read the information,
what's in front of you.
Meghan Smallwood (30:25):
I've always wondered, too, with parents,
when you are doing the research,what do you find the most useful
in terms of, like, the format ofthe information, because there's
so many pages you could justscroll. Do you like when it's
broken down like bullets? Do youlike having a visual timeline?
Do you prefer, like, here's alink, click on that. Here's
another click on that. I mean,I'm just always wondered what's
the easiest way for parents tobe able to digest it?
Remi Nirschl (30:50):
Question and answer.
Meghan Smallwood (30:52):
Question and answer.
Remi Nirschl (30:53):
How do you go through SSI? And then here's the
steps to do it.
Meghan Smallwood (30:59):
And what does this mean, and who is this and
that like, okay,
Remi Nirschl (31:04):
Also, I found a page in the DDA with acronyms,
because there's, like, so manyacronyms out there that being
tossed out that they know, butparents like us don't know.
Right? You mean FMS? What do youmean? SSI. SSI, I stumbled into
(31:26):
that one. Nobody told me aboutit. I just stumbled. Oh, here it
is. That's a good one.
Patrick Cadigan (31:33):
In the process, as you guys have gone through
it, was there anything that wasless difficult to do than you
actually thought it might be.
Meghan Smallwood (31:42):
Sounds like SSI was,
Remi Nirschl (31:45):
Yeah, that was, and we also went through
guardianship...
Nick Nirschl (31:50):
Right, so...
Remi Nirschl (31:50):
The thought of guardianship was overwhelming
and scary, but when we plan toout what are the steps we need
to do, okay? This is what I needto do, implement and then
execute.
Patrick Cadigan (32:07):
When you talk about guardianship, what do you
mean?
Nick Nirschl (32:10):
So when a child becomes an adult at the age of
18, in theory, they are now thedecision maker, and their
parents can't do things for themwithout them giving giving
approval. And so for our childin particular, he's not capable
of making those decisions. Andso certain children with
(32:32):
disabilities might have thatissue. Guardianship is just a
legal process where the courtsays, yes, the child is not
capable of making thosedecisions. And so somebody it
could be a parent, or it couldbe somebody else is the guardian
of that individual and isbasically the person who signs
(32:53):
off on decisions, medicaldecisions and other things.
Remi Nirschl (32:58):
So for some parents, this may not be an
obvious route, because yourchild may be higher functioning,
and it's a decision that theyhave to make whether, if this is
something that they will gothrough, because you don't have
to go through it. But for ourson, it was obvious.
Nick Nirschl (33:16):
Right and I can imagine that there's like some
some line where kids probablyfall like they can make
decisions in certain cases, butin other cases they can't, and
so it's a more difficultdecision to make, as we said for
our in our case, it was prettyobvious.
Meghan Smallwood (33:34):
Yeah, it's a very individualized decision.
And there's other alternativesto guardianship too, which I'm
sure we're going to talk aboutin a different podcast, but...
Patrick Cadigan (33:43):
As we've navigated through this
conversation, I've heard youguys talk about several things
that would be helpful for otherparents. Is there, is there one
thing that you're thinking aboutnow that you just kind of look
back and say, oh, man, I wish Iknew that, or a particular
resource?
Nick Nirschl (34:04):
Yeah, I'm not sure that we have that like...
Meghan Smallwood (34:07):
I think what I've heard is starting early is
key, and doing the research,because I know you both have put
the work in since he was 14, andyou know, been going to the
sessions and having meetings,and you're really dedicated to
the vision you you want for richand what he would be happiest
doing, so...
Remi Nirschl (34:28):
I would say to the parents whose children are in
the school system, reach out toyour transitional coordinator,
like Meghan, she is my son'stransitional coordinator, and
I'm really grateful, because, Imean, you have been so helpful.
I mean, I said, Oh, can I emailyou over the summer, sure, yeah.
(34:49):
And I made sure that I didn't,because I would needed to give
you a break.
Nick Nirschl (34:54):
Yeah. And a lot of it is like, you run into certain
people who are are reallyhelpful, and then you stick. At
them, and some people are less,less responsive than others, and
so you just have to find theright people and...
Remi Nirschl (35:06):
I feel I find it that people are generally
helpful. I think Richie has beenblessed to have been with the
teachers he's had and the peoplehe's connected with. I mean,
he's just pretty much kind ofled us to finding really good
resources. I don't knowsomething about my son that's
just, ummm...
Nick Nirschl (35:27):
Yeah, it's funny, because he has that personality,
like when he's when he's indistress, it's really difficult
to deal with, but when he'shappy, he tends to attract
people who want to help, becausehe's just got that personality.
Remi Nirschl (35:41):
And I say to parents, people generally do
want to help. I think sometimesour anxiety gets in the way of
seeing that, but there arepeople that are out there that
are willing to help parents likeus. I mean, I found that to be
true so...
Patrick Cadigan (35:58):
Well. I think that that is a very positive
note to end on. Meghan, that wasthat was really cool.
Meghan Smallwood (36:14):
Yeah.
Patrick Cadigan (36:14):
I was glad we could talk with them. Well,
thank you. Thank you. Thank youto the Nirschl's one more time
for sitting down with us, takingtime out of their day, and we
were going to do more.
Meghan Smallwood (36:24):
Yep.
Patrick Cadigan (36:25):
We already have a list of people that we'd
really like to talk to and butwe're at the end of our episode,
man, we made it again.
Meghan Smallwood (36:31):
Yeah.
Patrick Cadigan (36:32):
Good deal.
Meghan Smallwood (36:33):
As always, you'll find links to the
information from ourconversations in our show notes.
We would love for theinformation from this and all
our other discussions to reachas many families as possible,
and we need your help to dothat. You can find our
conversations at www, dot P,twotransition.com, like, follow,
share out the podcast. Ourconversations are posted to all
(36:56):
the major platforms, includingApple podcasts, Spotify, YouTube
music, and that's just naming afew. So please share and share
often.
Patrick Cadigan (37:06):
Please check out our YouTube channel. We've
done some of the legwork for youby curating videos of topics
that revolve around transition.
We have playlists forguardianship, alternatives to
guardianship ABLE accounts, andthere's more to come. So please
be sure to subscribe there aswell. And finally, check out our
website, which is full ofinformation and links to
resources around the transitionprocess. Open your web browser
(37:27):
of choice and surf towww.postsecondarytransition.com
we thank you so much for thetime that you've spent with us,
and look forward to talkingagain soon.
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