ETB 47: Ever thought of how daunting the prospect of going on a vacation with special needs children might be? Imagine being a single parent to two wonderful boys on the autism spectrum and deciding to embark on a solo trip. That's exactly what my guest, Mary Ann Hughes, courageously did. Mary Ann's incredible journey of managing a cruise vacation with her sons is filled with insightful experiences and practical advice. We talk about the pre-journey preparations, making dining and accommodation comfortable, and special tips and tricks for sensory-sensitive children.
Mary Ann's accounts are filled with realism and honesty, making it relatable for every parent or guardian navigating through similar paths. One of the highlights of our conversation is Mary Ann's well-thought-out use of social stories to prepare her boys for the trip. We delve into the details of how she ensured a smoother journey via cruise, considering the comfort of consistency that it offers for her sons and many other families. We also share the importance of headphones and locating quiet spots, making the experience enjoyable for sensory-sensitive children.
Mary Ann talks about her business, Special Family Transitions which was birthed from her personal experience of navigating through the challenges of special needs divorce. As a certified divorce coach she is able to provide guidance and support to others who find themselves in a similar situation.
Lastly, we shed light on the wealth of resources that are available for families with special needs children in the process of transitioning from school to life after school.. From private to public and church-based programs, we navigate through the sea of options and offer guidance on how to make the most of these resources.
It's a heartening conversation filled with useful advice, personal anecdotes, and hope for those in the special needs community. Join us for an episode that promises to inspire, educate, and offer a fresh perspective.
Connect with Mary Ann:
Email address: Maryann@specialfamilytransitions.com
Website: https://www.specialfamilytransitions.com
Special Family Transitions Facebook Page:
https://www.facebook.com/specialfamilytransitions
Special Family Transitions on Instagram:
https://www.instagram.com/specialfamilytransitions/
Special Family Transitions YouTube channel:
https://youtube.com/@specialfamilytransitions
And here is a low-priced 1-hour course Mary Ann developed for moms of children with disabilities to learn how to plan for success in a special needs divorce:
https://maryannhughes.mastermind.com/masterminds/37115
Connect with Sandy:
IG: https://www.instagram.com/sandydeppisch
Embrace the Blessing Facebook Group: http://bit.ly/ETB4ME
Website: http://www.embracetheblessing.com/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Sandy Deppisch (00:05):
Hey there, i'm Sandy Deppish, and this is the
Embrace the Blessing podcast.
Each week, i talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, Mary Ann, i am so excitedto have you back again today.
You know I was looking back atthe past episodes.
You have been a guest twicealready, so this is your third
time.
Thank you for that, because youhave so much wisdom and I just
(00:52):
love your perspective on things,so I'm thrilled to have you
back.
You were here in December of2021 when you introduced Special
Family Transitions to us, andthen you were back in August and
you talked about amazing waysto find respite care, which you
had so many helpful hints andtips.
So those of you who have notseen before or heard her before
(01:12):
, you will have the pleasure ofhearing all about the wonderful
things that she does, but youcan go back and check episode 11
and episode 39 to hear herother recorded messages.
So, before we get started intothe meat of the conversation.
I would like you to introduceyourself to those who haven't
met you before and tell us aboutspecial family transitions and
about your boys.
Mary Ann Hughes (01:33):
Great Thanks, Sandy.
It's a pleasure to be here andhappy to be here for the third
time and hopefully more to comein the future.
But so my name is Mary AnnHughes.
I'm a mom of 2 kids on theautism spectrum.
I call them kids, but they'reyoung adults, but they're always
my babies.
And so several years ago I wasfaced with divorce unexpectedly
and made it my mission to getthe best result I could.
(01:54):
I managed to get through theprocess and got a good result
for my family.
but I decided other familiesshouldn't have to work so hard
to get through divorce andfigure out what to do to
navigate the process and what todo for their kids.
So I started Special FamilyTransitions, became a certified
divorce coach and now I helpother people who are facing
those challenges so they canfigure out what to do and save
(02:17):
time and effort also a specialenergy in the process as well.
Sandy Deppisch (02:21):
I love that you took what was extremely
difficult for you to walkthrough, I'm sure, a situation
that nobody wishes on anyone andyou turned it into something to
make a difference for otherpeople.
That's just so admirable.
I love it And I'm sure you aremaking a big difference for a
lot of people who probably, whenthat happens, it's usually
unexpected And oftentimes peopleare overwhelmed and they don't
(02:45):
know where to turn.
I'm sure it's hard enough foranybody, but when you have
children one child and you havetwo that have special needs,
have differing needs explainingall of that to them, trying to
help them through that whileyou're walking through it,
there's just so much involved.
So much to this.
Mary Ann Hughes (03:03):
Exactly So many pieces to figure out how it all
works together so that the endof the day, you come out better
and your kids are okay as well.
Sandy Deppisch (03:10):
Right, yeah, and you are doing well now .
Mary Ann Hughes (03:13):
We're doing great.
Yeah, thanks for asking.
Yeah, it was a long, hard roadand we've all learned a lot, and
I think that's how we learnthings in life.
We've got to go through somehard times.
I'm not that I wish hard timeson anybody, but definitely it
was a growing experience.
And here I am today talking toyou on a podcast when back in my
old life I didn't thought ofdoing that.
(03:34):
Yes, I was going to ask.
Tell us about the hat.
So the hat.
so you talked about having adiscussion, sharing some tips on
my recent vacation.
So, as a single mom, i made abig leap.
last year I took my firstairplane vacation with them, on
my own, without any help, andthat went well.
And so this time I decided togo on a cruise first time as a
(04:01):
single mom going on a cruise andI'll talk about how I manage
that.
So I got the hat for the cruisetheme and I got to also admit
it's been a crazy summer.
Literally this is the first daythat I don't have my kids with
me on a weekday, and so Ihaven't had time for my hair.
So that's the other secretreason.
Not so secret now, but yeah,thought to be kind of fun.
Sandy Deppisch (04:21):
Yes, I love it.
So back up for a second.
I'm still like stuck in thespot where you talked about you
took to both of your sons on aplane by yourself.
That to me is terrifying.
to think of taking my son bymyself on a plane I don't think
I have the courage to do that.
How did you do that?
How did it go?
Explain the process.
Mary Ann Hughes (04:43):
It went really well.
I mean, there's moments wherethings don't go exactly as
planned or expected, but we havebeen several airplane flights
before.
Okay, in the past, and the wayI prepared my kids for that was
I created social stories.
I think we've talked aboutsocial stories.
That may be a past episode, yes, but every time we go on
(05:04):
vacation I created a socialstory so we'd know what to
expect, where we're gonna bestaying, kind of what we're
redoing, so they know kind ofwhat's gonna be happening.
And the very first time I wenton an airplane, that was a very
scary time.
I wasn't sure how to approachthat, and so a lot of my social
story was about going throughthe airport, what it looks like
(05:25):
to go on a trip, expectedbehaviors at the airport and the
airplane And once we get to ourdestination and so, yeah, i've
been kind of taking that Everytime we do something new, i kind
of use that approach to kind oflet them know what's coming
next, what this like, so thatthey're part of the process.
Like, okay, well, this day mymom said we're gonna be doing
(05:45):
this Right.
As simple, as elaborate as yourchild may need.
Some people may use morepictures.
I combine text with pictures onmy download of off the internet
or maybe of us, of people thatmaybe we're traveling with or
going to go visit, so that waythey can see them ahead of time
too, as relatives they don'tknow.
Or if they do know them, it'skind of fun to look back on
(06:08):
those as a memory as well lateron.
And so yeah, so I carried thatconcept over.
Even in divorce, I use a socialstory to explain the divorce.
And so, and now for our crews,I had one of those as well.
Sandy Deppisch (06:23):
That's just such a genius idea And you have
shared that before and I haven'ttaken that into consideration.
And I really need to do that,because there are some times
where I'm exposing my son tosome new experiences and I tell
him about it, but the visual isso important.
And now I love Canva.
I don't know if you're familiarwith Canva, but now you can go
(06:44):
on Canva and just create wholevideos and add your text well,
not your texture voice to it, soyou can tell the story, and
then they could listen to thevideo and play that over on
their iPad.
So that would be a simple wayfor me to do.
I love that.
I hope you get a way to do that.
Mary Ann Hughes (06:59):
I haven't done that.
That's a good idea to do thatThat way they can.
They don't wanna read it on ahard copy.
You can just narrate your own,which is a great idea as well.
Sandy Deppisch (07:05):
Yeah, yeah, just the preparation, knowing what's
gonna come.
I remember with my typicallydeveloping kids when they were
little, I used to again, it wastelling, not visual, but I would
tell them this is what we'regonna do, we're gonna go to the
grocery store.
When we get there, this is theplan, here's what you will do,
here's what I will do, here'swhat your behavior will be like
when we're there.
And then in the car, i wouldtell them again, and then, when
(07:26):
we're in the store actuallydoing the thing, i would say
remember, we talked about thisand this is what you're doing
and this is great.
And then when we would leave onthe way home, i would say you
guys did it.
That was amazing And it came sonaturally to me to do that with
my typically developing kids.
But I'm just stunned that rightnow, even with you telling me
twice on the show how great itworks, i don't think to do that
(07:47):
with my son, but I will.
I will moving forward.
So, yeah, that's awesome.
So you felt empowered by thesuccess of the solo trip on the
plane and you took the cruiseWas that?
out of Galveston?
Mary Ann Hughes (07:59):
It was, and that's probably the reason for
going on a cruise and using thattype of route is you wanna find
a port that's convenient to you.
So I mean, granted, there'scruises that go out of West
Coast, east Coast Florida is abig hub for cruises and granted,
they have some nicedestinations that they go to,
but then you've gotta add a tripon top of a trip, and so that's
(08:21):
too much.
And so if I'm gonna go on acruise, at least in the
immediate future or near future,is gonna be out of Galveston.
I'm in Houston, so we justdrive down there, park and get
on the boat.
Basically, Now I will say thistime I did it differently.
I thought, okay, let me savethe trouble because there's so
many moving parts of doing this,let me get a ride to the
(08:42):
airport.
So I had somebody pick us up,drop us off and that works well.
So you can either do it as avolunteer or a paid service,
because really you're gonna haveto pay for parking anyway.
So just pay a little bit more,maybe, and have someone take you
, so whatever works.
And then if you are gonna takeyour car, then you find a
parking garage to park and thenthey have shuttles to drop you
(09:04):
off at the terminal.
So either way works out,depending on who you're
traveling with.
In the past we've traveled withextended family, like my mom and
her sisters or something likethat.
So I've had in the past and Ihad my spouse at the time, but
we had young with disabilitiesand we had older people to deal
(09:25):
with as well.
So it's managing that, but ifyou can.
But we learned our lessons, iguess, over the years.
So when you have an elderlyperson or someone who has a
physical disability, whateverage they might be, or any kind
of disability as well is, youcan ask when you first make your
reservation.
Let them know that and they'llbe in your record, as well as
(09:47):
any kind of dietary restrictions.
But once you get to the terminal, just go to the agent who's
standing there in the front ofthe by the main doors, and you
don't have to stand in the longline.
So they'll let you in.
And once you're in the terminalthey'll take you basically to
the front of the line So youdon't have to stand in the long
(10:08):
line for security, x-rays, allthe check-in process.
So basically, it was prettyamazing.
We were dropped off and by thetime we were dropped off to the
time we were on the boat, it was15 minutes, which is a Amazing,
that is unheard of.
Yeah, and so we chose an earlycheck-in time.
So I recommend that and youwanna do that for a couple of
(10:31):
reasons, and the biggest reasonto me is that you get on the
ship early and so, instead ofhaving your lunch at home, you
can get on and enjoy the ship,eat lunch while you're waiting
for your luggage to come on andgo to your cabin, and so that's.
Another tip is, if you don'thave very much to carry and if
(10:52):
you have two cases with wheels,it might just be easier to carry
them on.
But we checked ours in and justhave like an extra backpack
with you of things that youmight need for the first couple
hours until everything gets onthe ship to your cabin, which
they'll deliver.
But that helps.
And getting off the ship is wejust went ahead and took them
off directly because we hadusually we have overpack and I
(11:15):
have way too many bags.
This time we had limited it, sothat way we were able to get
right off the ship, get offquickly.
Once again, ask for the specialneeds type of provisions.
Even though my son's like, whyare you cutting in lime mom?
I'm like, no, we're not cuttingin lime, permission, it's okay.
So anyway.
So that helps Just a little bitof a time saver tip there.
Sandy Deppisch (11:36):
Yeah, i'm glad to hear that they have those
accommodations in place.
It makes sense that they would,but I never really thought that
through And the idea of tryingto take a child with intense
support needs, in our case ontoa ship like that was
overwhelming to me.
but it sounds like it's doable.
They make it as easy for you aspossible, which?
Mary Ann Hughes (11:58):
is really nice.
They do.
Yeah, they've been overbackwards just being nice to you
and helping you on any way youcan And how does.
Sandy Deppisch (12:05):
I'm sorry.
How does it go with the meals,because you can either do the
mind time dining or you can justeat at any time.
Did you sit down in the diningroom?
Did you do the buffet typemeals?
Tell us a little bit about howthat worked for you guys.
Mary Ann Hughes (12:17):
That's a great question.
So I gotta tell you, one of thefavorite parts about cruises
for one of my sons is the food.
I mean, if we're on a cruise,we're just enjoying.
We did both the phase dining,sit down, all kinds of things,
and you get your food reallyquickly.
And so I remember and this is,of course, as much as you want
whenever you want it, all kindof things And we get home I
(12:38):
remember him sitting at thetable saying food.
I'm like, yeah, i want my foodtoo.
Who's bringing it to me?
So yeah, we kind of get spoiledbeing on vacation and being on
a cruise.
but back to real life, thatdoesn't always happen that way.
So that's one thing we likeabout cruises, and so what we've
done in the past is forbreakfast and lunch we do the
(12:58):
buffet, because we don't like towait, and then for dinner we
have the reserve dining time.
That's really important to dobecause that way you're sitting
at the same table, you have thesame wait staff and you can put
in your special orders.
So they kind of know how yourfamily works and what you like,
(13:20):
and so that to me my familyworked out best.
I will say, on this cruise wedid a little bit differently
because we were part of a largergroup.
It was for my son's kind of agraduation celebration cruise
And so for dinners we would dokind of on your own time diming,
which I don't recommend forseveral reasons.
(13:41):
One of it's a large group.
It's gonna take you a long timeto get seated.
You've got to make your lookingfor that cycle Also like going
to a restaurant.
When your party's there they'llseat you and they got to find
the table.
Especially with a large groupit's hard to do.
And then part of that was oneof my sons was not happy about
having to wait and then havingto wait for their food.
(14:01):
Because if you order on thetable and you order what we
would do because we had dietaryrestrictions, so you end up
ordering the night before forthe next night's dinner, really.
So you're gonna get right away.
Sandy Deppisch (14:15):
Wow, I did not know that.
that's huge, That's veryhelpful.
Mary Ann Hughes (14:18):
Yeah, yeah, and then they go big ugly as well.
But yeah then, yeah, the longerdinners were a little harder
for us, so I brought a helper.
I figure, okay, there's a lotgoing on.
And I still wasn't comfortable,right, you know, as I would
have been on the.
Our plane train was wind of asa family, so it was more
controlled.
This one.
There's a huge ship and toomany ports and too many moving
parts.
(14:39):
I really wasn't comfortable atthis time going by myself with
my boys.
So that worked out well.
So I had a helper come with me.
I'm a caregiver And the way wedid that is doing two cabins
that had a joining room.
There were joining rooms And sowhich also gave us joining,
opening up the balcony.
So we had a really nice balconyAnd that was nice to have extra
(15:01):
space Grant.
In the past we've only traveledin one room, and it's fine.
This time I was like, okay, letme just spend a little bit more
, instead of all squeezing inone room, we can have two rooms
and enjoy it better.
And that worked out well.
We're gonna have our downtimeand so on.
So if you can do it, great, ifnot, one room works just as well
.
Sandy Deppisch (15:19):
Right, that's a really great idea.
I remember on our most recentcruise we did the my time dining
And, just like you said, wewaited many times in a long line
.
That was just my husband and I.
But the other thing about itthat was very interesting, i
loved it, but I don't think Iwould love it if we had our son
with us is that we sat at adifferent table every time.
It was wherever they had space,and oftentimes it was with
(15:41):
brand new people.
There would be eight people atthe table and we would just be
the joiners, right, and so itwas great for us because we had
conversations and met someamazing people, But I imagine,
with individuals who likeconsistency and structure and
routine and need to know what'sabout to happen, that's not a
comfortable situation.
Did you guys have your ownsmall table each time, just your
(16:03):
family and the caregiver, orwere you other people joining
you as well, because otherpeople joining us.
Mary Ann Hughes (16:09):
We did have that, so I would have preferred
that.
Initially, on my reservation,we had that, but it was in a
different dining room and itbecame too complicated to do So.
this time we'd be like, okay,i'll just kind of go with the
group, but I won't be doing thatin the future.
Actually, i would recommendthat if you're gonna go in a big
group, have all of you doreserve time dining And that way
(16:31):
you can really request a sitdown or at least or have one
table at that time.
That way you're avoiding thelong ways.
And you mentioned aboutconsistency and routine.
That's one reason my familyloves cruises.
It's basically a resort on theship right on the sea, and so
everything is consistent.
You've got the same room,you've got the same hopefully
(16:54):
table waiters.
You kind of know what to expect, what the routine looks like.
But it's nice.
You have variety in terms ofmaybe on the ports, getting off
and seeing different things.
But everything else is kind ofthe same and consistent, and
that's part of the appeal of acruise, opposed to a vacation
where, like each night, whereare you gonna stay?
What are you gonna eat?
(17:14):
Trying to find food that yourkids will eat.
I know when we've done that inthe past.
Sometimes it works well,sometimes it doesn't, because my
son is kind of pee and notevery restaurant is gonna have
what he needs or what he decideshe wants to eat in a vacation.
Sandy Deppisch (17:27):
Those are really good points.
So the next thing that'sswirling through my head is what
about all the sensory stuffthat happens on cruises?
because there's nonstopentertainment.
I love that.
They give you the calendar onthe app all the activities that
are available to you, andoftentimes when you're just
walking through the ship, it'snoisy.
There's a lot of lights,there's a lot of action.
How do you handle that if youhave a sensory sensitive child?
Mary Ann Hughes (17:52):
Yeah, so what we have been doing for years is
my son will carry his headphones.
In the past it was harder toget him to use them.
Now he'll put them on when heneeds them.
So we always have them on ourperson And when three times we
forgot them, we had to run backto the cabin to get them.
But I would have those if youneed them.
So the way we tried to do it iswe didn't go to the really loud
areas as much as we could.
(18:13):
I mean, granted, sometimes youhave to cut through the casino
or whatever.
That's kind of crazy.
But we tried to find spots,like in the buffet area, that
were more quiet And that's sospread out that really it's not
a problem.
You can get your food donepretty quickly, except the
exception on that is theMongolian grill.
Whenever we seem to do that oneof my sons loves that You're in
(18:35):
line forever, especially ifyou're on a port day.
I guess watch us a sea day.
But if you're on a port day, ifyou do it at the right time,
you can get in and out quickly,which my son tried to do, and it
was still a long line Anyway.
So we carry the headphones Andthis year they were old enough
that we were able to go to thecall it on the Chronicle, the
Serenity Deck.
So the adult age With the pool,in our case this ship, it was
(19:00):
just the hot tubs, but it wasnice because when you go to the
main deck and the big pool ifseveral main pools, they're
really loud You got kids runningaround, people drinking, all
kinds of commotion going Andthat can be too hard, especially
around the water slides and allthat.
So we found that it's a nicelittle escape to be able to go
to that other area.
(19:20):
And then if your kids areyounger you can't do that.
That's the first time we'vedone that.
So yeah, just kind of findtimes off, peak times to do that
.
And then that kind of leads tothe discussion about excursions.
So in the past we never did aship excursion because we
thought that would be too hardto manage, too much sensory and
big group and try to get up andcrowded places.
(19:44):
So in the past we would eitherjust get off the ship and just
walk around.
If a support where you could dothat Or what we did, especially
when we traveled with elderlyfamily members, is we would
ahead of time hire a van, book aservice that they would take us
around, and that way they giveus a private tour.
You're not in a rush, youalready arrange what you're
(20:04):
going to be doing, you have aset price And that just makes
life so much easier.
This time we thought, ok, let'stry the excursions for the first
time, and the main reason forthat is my son wants to go to a
place in Chichen Itza.
He's really into thesearchaeological sites in Mexico
and attractions and so on, andso there was no way that on our
(20:25):
own we could have done that andguaranteed to be back in time
and not have the ship leavewithout us.
So the nice thing about shipexcursions that they'll wait for
you, right?
if the bus is running late,they're not going to leave
without you.
So we don't want to take thatchance.
We went ahead and did it.
It was actually a nice trip Andwe enjoyed it.
Now I will say it was hot.
So he wasn't expecting that AndI'm glad we did it.
(20:48):
And what I'd recommend also isbring plenty of snacks with you,
not be what your child will eat, either on the bus or when you
get to your destination, andjust to make sure that you have
enough water and things likethat.
So that was the one day I think.
Two trips we took with anotherexcursion just to keep it low
key.
So we don't want anything liketoo many moving parts.
(21:10):
So we did an open tour bus ridekind of thing, taking one to
different sites and things andgoing to the beach.
That was kind of a lot.
There were moving parts on that.
So maybe I would have maybedone something a little bit with
fewer moving parts on that.
But yeah, that was the one dayafter one of the excursions that
(21:31):
I think, as of the long day andnot having enough snacks or
water and just all the activityhe did get worked up that day.
So I'm glad especially that dayI had help to help calm him
down.
But overall everything wentreally well.
Sandy Deppisch (21:46):
That's excellent .
These are all such great tips.
I was curious about theexcursion, so I'm glad you
talked about that, because it'soften difficult to navigate.
Just the ride to the placeyou're going to end up at Can be
long And yeah, and there's alot of pieces to all of that.
So, yeah, you've got somereally great tips there.
Not that you're probably evenaware, because I know.
(22:08):
When my son was younger, i usedto be hyper focused on what are
people thinking about us inthis moment, when there's maybe
a meltdown or when things aren'tgoing well.
Now I don't even notice it.
It's just like I'm involved inwhat's happening and I'm more
concerned about making sure myson is calm and calming down
than being concerned.
But how were other people onthe cruise towards you and your
(22:32):
family?
Were there?
was everybody kind and gracious?
I mean, the staff obviouslywere, but did you have anything
that maybe wasn't pleasant And,if so, how did you deal with
that?
Mary Ann Hughes (22:41):
No, so I think overall we had a pleasant
experience.
Like you said, everybody on theship was great.
Once in a while people mightgive you funny looks But, like
you said, as you get to acertain age you don't really
care anymore, right?
So that's a black and white.
for somebody recently dealingwith diagnosis is it doesn't
matter if people think of you,just worry about you and your
(23:04):
child and getting through thatmoment, having fun.
But people, if you want, youget to the time to educate them,
if they have a question, or ifyou want to share, but don't
feel like you have to share,right, people may overshare or
sometimes it's helpful.
I've had people come up to me.
This was an occasion situation,but one time my son had a
meltdown at Costco And so I hadpeople both give me looks and
(23:26):
also ask me if I needed help.
So it depends, right, you canlook at it as an opportunity to
educate them about a disability.
It may not be a visibledisability, right?
I mean you look at my son, youwouldn't know It's a disability.
You're wondering why is this16-year-old on the ground having
a fit?
So, yeah, you just learn tokind of roll it, do what you can
(23:47):
get through that moment andthen move on.
Sandy Deppisch (23:51):
Yeah, exactly, and so it sounds like it was an
amazing trip.
You think you'll do anothercruise.
Mary Ann Hughes (23:57):
Yeah, i think so.
I think next time, though, wewill do the reserve time dining,
and yeah, this one was group,so I think there were a lot of
moving pieces there, so I thinkmaybe just a smaller group or
just our family might be abetter way to go on that.
But for people who are kind ofafraid to do it by themselves,
(24:18):
there's a company called Autismon the Seas that will support
you and help you and providecaregiving, assistance and group
meals and respite, so that theparents can also have some
downtime.
Sandy Deppisch (24:32):
That's so nice.
Mary Ann Hughes (24:34):
Yeah, that's why I brought my helpers.
You're constantly on watch,especially on a cruise, And I
needed like, if I'm going onvacation, I want it to be a
vacation, have a little bit ofdowntime.
Thanks, right, And we'retogether.
But for the few times I neededjust time alone or just to walk
around the shops or go get mypictures.
I knew somebody was there.
Sandy Deppisch (24:52):
My kids were going to say Yeah, that's a
really great idea to bring ahelper along with you.
So tell us about your boys andthe transition that both of them
have just gone through, andwhat life looks like for all of
you moving forward.
Mary Ann Hughes (25:06):
Yeah.
So both my sons graduate fromthe respective program.
So my older son aged out ofpublic school.
He's 22 now, so that's the endof official school where IEP is,
and all that.
And so for some time I had beenthinking about what the next
steps would be, and a few yearsago when I was in my divorce,
(25:26):
trying to investigate differentoptions.
So I had looked at differentones and honestly I knew some
were not going to be right forhim and some I didn't know if he
would be able to get into orhow it would work out.
So luckily we applied to one,had a trial and it was
successful, and so we're stillwaiting on our start date.
(25:47):
It should hopefully be in justa few more weeks, but we're
excited for that date programwhere they're really active with
them taking them out to thecommunity.
So it's not.
I mean, some depends on yoursituation and what you're
looking for.
There's some and you have to goto go visit them So see what
they're like.
Right, that's the best way tomake a decision is see what they
(26:09):
do and see where you and yourchild you know if you'll come
with that You can always make achange too.
So you know, i joke that everyyear we have to reevaluate and
kind of make plans for the nextyear.
I think that's still going tobe the case, right, right, and
maybe you know, things willchange, people will develop in
different ways, and so, yeah,that's the hard thing is knowing
(26:32):
.
There's not one right answer.
Things can change for whateverreason.
So, yeah, kind of go with whatyou have and the best choice for
now, and if it's not the rightchoice, then you'll know, and
then you can make changes later.
And then my other son, myyounger son.
He was able to get into aprogram at the University of St
(26:56):
Thomas.
He was in the first class atthe time where they developed a
program for students withlearning differences, and so it
was a two-year associate programand he just finished data And
now citing news where they'regoing to start a bachelor's
program as a continuation ofthat.
So he's going to be the firstclass of that bachelor's program
(27:16):
too.
Sandy Deppisch (27:18):
That's so exciting, Oh my goodness.
So what is he studying?
Mary Ann Hughes (27:22):
So it's a program that you study.
It's kind of like a I don'tknow if I know, but it's like
classes across the board,everything from pays into urban
planning and emergencymanagement.
So they got some of thoseclasses the classes for other
interests as well, somepolitical thing So they have a
set curriculum, but you can also.
(27:43):
What they've introduced now aspart of this bachelor's program
is you can select a minor And sowith that you'll actually take
a regular university class.
Wow, so that's something newfor us.
So it's so fun to get to knowhow that will look.
So you'll take maybe one classin that minor in the general
population, as you're stilltaking the ones in your cohort.
Sandy Deppisch (28:05):
Okay.
Mary Ann Hughes (28:06):
Where you're in the set set, set, set set
curriculum, so that makes it fun.
Sandy Deppisch (28:09):
Wow, yeah, that's so exciting.
Well, so back up to your olderson that aged out of school, so
it's a day have program thatyou're speaking of.
So talk a little bit about that, because how did you find I
mean, you say you have to govisit them How, if you're in
this situation and you need tofind a day have, like that, how
(28:29):
do you go about researchingthose?
Where do you?
does somebody present you alist and say here are the ones
in the area?
do you have to Google ityourself?
Like, how did you start thatprocess?
Mary Ann Hughes (28:37):
That's a great question because it's hard to
get that list And everyone isgoing to have different
recommendations.
So one way is to ask at school.
There should be a transitionspecialist there And that person
did provide some names of someplaces that they recommend.
maybe they visited them, theyknow about them, have had
(28:59):
success sending people there.
You know, after school I foundthat list wasn't really
comprehensive and maybe not upto date with some of the maybe
more recent and new programs outthere, but definitely it's a
start.
You know there's a lot ofFacebook groups, as you know.
(29:19):
As you know that we're on wherepeople will provide information
.
It was my intent to try to sharea lot of that information and
what I will do in the future.
So I've shared informationabout like college programs and
post high school programs foreducational ones that I haven't
done the day have once.
But all the ways I learnedabout them, as well as going
(29:40):
through resource fairs SometimesI'm presenting at those and
sometimes I'm just there justlearning And even the ones I'm
at, i select to walk around tothe different booths and meet
different people and learn aboutthe different resources.
But yeah, there's still so manyand I have learned about, you
know, ones that are not on thisby going to these resources,
(30:01):
these resource fairs.
So there's, there's privateones, there's public ones,
there's church based ones,there's different things out
there, So no-transcript.
And also I've had luck whereour transition medical
transition clinic.
The social worker thereprovided a list and that was a
(30:22):
pretty comprehensive list aswell.
So I'm happy to provideinformation and you can connect
people as well to some of thoseAnd I'll go ahead and put them
together eventually.
That has different lists and soon and how to reach them.
But yeah, there's so many outthere And so some of them, like
I mentioned, some will takewaivers or waiver, yes.
(30:43):
So that's another consideration.
You know you wanna wait forthis for years and years and
they don't always come up whentheir child ages out of school.
So then you gotta figure out,okay, what can you do?
There's some of them will takeprivate pay, but some of them
won't.
There's also through your LIDA.
So ours is Harris County, theHarris Center, where they have
(31:06):
some programs.
So you have to apply ahead oftime all these things you gotta
do ahead of time.
So start thinking at least afew years before.
And so, whichever LIDA that youwork with, let them know, if
you have a case manager and ifyou're not ready in that system,
you know, get signed up,because you don't have to be
part of the waiver to do that.
There's another way to get intothe system directly through
(31:29):
those organizations, and so theyhave things that they can offer
as well.
So that was a long answer to aquestion, but there's so many
resources out there and there'snot one central database as it
gets to the problem.
Sandy Deppisch (31:40):
Right, right.
And so when you went to visit,you call them, make an
appointment, i assume Did you goby yourself, did you take your
son with you to see how he feltabout it?
What did that look like?
Mary Ann Hughes (31:50):
Yeah, the first time I went by myself I
researched it, kind of went tothe website, kind of learned a
little bit about them And forthe ones that were interesting I
would make appointments to govisit.
And so usually they're realgood.
Sometimes they do group tours,sometimes they'll do individual
tours, so depending on thelocation.
And then a couple of them, ithought that I liked I brought
(32:11):
my son for an appointmentbecause they left to screen them
And so at the time I was goingthrough divorce, for instance,
like a you know Brookwood whichis like the premier place, i
took him to Sisi and they'relike no, we can't really accept
him based on his behavior.
So you have to go to the rightfit.
I mean some, i mean you're allsupposed to be for disabilities,
but there's different levels ofcare and then the population
(32:34):
and the type of individuals thatthey can best work with.
And so that was reallyfrustrating.
It's like you know, what do I do, right, you know, this is even
the private pay.
One won't even take them, andso that's what was real weird
about what the future would hold.
And so, luckily, he's made somuch progress over the years.
That's not the one we're goingto, but two years ago he wasn't
(32:55):
going to be a fit this other onethat we visited And now he made
so much progress over the yearsat school that now he is a
candidate for that.
And so part of that is, whileyou're in high school, be sure
that they put your child in aprovocational type program,
transition type program, wherethey go out into the community.
(33:16):
They learn the skills even inthe classroom about how to do
different tasks.
But the longest time theydidn't want to put him in those
programs.
They're like no, he needs towork on behaviors.
Like well, okay, well, we'reonly going to get so far with
that.
We have to have some skills now, and so, luckily, this past
year he was able to be in a 18plus program.
They have different levels ofthose in my district, and so two
(33:38):
days a week they will go out inthe community, like to the food
bank and places like that Andthey would learn those type of
skills, and so I think thathelped him a lot to show that he
could be in this other placewhere they also do things like
that.
Sandy Deppisch (33:51):
Right, yeah, that's fantastic.
Those are excellent programsand they definitely have their
place in the schools for thosewho don't want to leave the
school at 18 and they want tostay in until they're 22.
Those are the 18 plus programsare amazing.
Mary Ann Hughes (34:04):
Yeah, well, i have one thing on that.
So I've heard from a lot ofparents that they're getting
pressure from the schooldistrict to leave at 18.
And so, no, it's your right tostay.
So just keep that in mind.
I mean, it's your decision.
But I've seen a lot of caseswhere we're saying, no, you're
best leaving, and so if you'regoing to do that, make sure
(34:25):
there's something out there.
Make sure you've looked at whatthe next step is, because you
don't want to just kind of falloff a cliff at 18.
Like now, especially if youdon't have funding.
What do you do?
You don't want to just graduateto the couch, as they say,
right.
I mean, i think to see too manyposts of people like that.
They're just like a child athome, a young adult, and there's
not a place for them to go Andthey're just not doing much, and
(34:46):
that's.
We don't want that.
That's kind of sad.
Sandy Deppisch (34:49):
Right, exactly, that's a very good thing to
point out.
So if you are getting pressureto leave at 18, start planning
at junior high what the plan isgoing to be, but also advocate
for your child.
Like you said, it's their rightto be able to stay until 22.
So don't feel that pressurethat you have to leave.
Yeah, again, you just have sucha wealth of information.
You're going to have to do somemore amazing adventures so you
(35:10):
can come back on and tell us howwe can navigate those in the
future.
But for those who want to reachout to look at your website and
to find out what you're doing,i know you've done a course
recently.
Tell us quickly about that Andthen I will link in the show
notes all of the resources thatyou share with us so that people
can find you.
Mary Ann Hughes (35:26):
Yeah, i appreciate it.
So my website isspecialfamilytransitionscom and
you can find me under all socialmedia special family
transitions, and so the coursethat you're referring to I
appreciate you mentioning thatis a one hour mini course of the
top tips you need to getthrough divorce when you've got
a child with disabilities, to besuccessful in a special needs
(35:49):
divorce.
So I took my knowledge, myexperience, things that I
learned, as well as my learningsas a coach in a really low
price, quick, easy digest formatso people can kind of figure
out what to do and then figureout what their next steps need
to be.
So I have also free resourcesas well and I can also offer
one-on-one coaching based onyour situation.
(36:11):
But, yeah, definitely, thatcourse is such a low price point
and I think it's a Let's, let'stap or anybody who's going
through that I did want to addto.
So on my cruise although I didhave one day where I woke up
early and Was able to stand onthe balcony and make little mini
videos about some of the tipsthat we discussed and some more.
(36:32):
I haven't posted them yet, butI will, so look for those.
I'll try to Also send you alink when those are ready.
Sandy Deppisch (36:39):
But so yeah, it's kind of fun to what a great
idea Yeah, yeah great idea tomake a video and and back to
your course.
So I would think that that's agreat first step for people,
because I'm sure there's a lotof apprehension and fear and
overwhelm, and so Havingsomething like that to say, okay
, i can breathe, here's someactionable steps I can take, but
(36:59):
then to reach out to you andhave a hand to hold through the
process from somebody who's beenthere, who can coach you
Through, i think that would beinvaluable.
So I love that you offer thatservice.
I hope that nobody ever has touse it, but I hope that if they
do, they come to you.
Mary Ann Hughes (37:15):
Because I'm not , you know, saying people should
get divorced and I advocate forit.
I'm there.
If you're facing divorce forwhatever reason you mentioned
earlier in the conversation,which was my case as well, is
that sometimes unexpected?
but sometimes it's the mom whoReason things you know aren't
right in the relationship.
There's a lot of issues that alot of times women are the ones
(37:35):
who file for divorce, and so Youknow you want to do what's me
right for your child, andsometimes being in the home That
doesn't have all the stress andconflict is better for that
child.
I think it's hard for real tosomeone else to really accept
that.
But but really you know Youwant to do what's best for the
child else, for the child first,no matter what, and then you
know How can the mom and dad getthrough this process to do
(37:58):
what's best for the child andthen co-parent effectively.
That's that's the best you knowsituation.
Sandy Deppisch (38:03):
Exactly, and and the rate of divorce among
special needs I heard somethingrecently around among families
that have an Individual specialneeds is like 87% Eight.
I don't know if that's real,that's what I saw on somebody's
post, but that's staggering.
And So, yeah, people definitelyneed support to work through
that process and, and like yousaid, to get to a healthier
(38:25):
place where There's not chaosand there's not stress, because
the the needs of the child needto come first.
And, yeah, i love your outlook,i love your perspective, mary,
and you are delightful, i lovehaving you on and I definitely
will invite you to come back onagain any last tip or word of
wisdom you want to share with us.
Mary Ann Hughes (38:43):
Yeah, just make time for you.
So part of the reason for thehat is I haven't had time to
take care of my hair.
I just have fun for the, forthe, the cruise theme.
But, yeah, take care ofyourself, to cure your kids and
you'll be okay.
Yeah, every day, you know, welearn something.
We help our kids get better andwe get better along the way as
well.
So absolutely.
Sandy Deppisch (39:02):
Thank you so much for being here.
It was a joy having you.
Thanks for listening to theembrace the blessing podcast.
Visit Embracetheblessing.
com/ podcast for show notes andlinks to any resources mentioned
.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
(39:26):
just like you.
Hey there, i'm Sandy Deppish, and this is the
Embrace the Blessing podcast.
Each week, i talk with a parentwho has a child with a
disability.
They share their biggestchallenge, their greatest joy
and their hopes and dreams forthe future.
You'll learn about resourcesavailable to you and discover
helpful hints and tips.
If you want to be inspired andencouraged, stick around.
(00:28):
Let's walk the road lesstraveled together.
Well, Mary Ann, i am so excitedto have you back again today.
You know I was looking back atthe past episodes.
You have been a guest twicealready, so this is your third
time.
Thank you for that, because youhave so much wisdom and I just
(00:52):
love your perspective on things,so I'm thrilled to have you
back.
You were here in December of2021 when you introduced Special
Family Transitions to us, andthen you were back in August and
you talked about amazing waysto find respite care, which you
had so many helpful hints andtips.
So those of you who have notseen before or heard her before
(01:12):
, you will have the pleasure ofhearing all about the wonderful
things that she does, but youcan go back and check episode 11
and episode 39 to hear herother recorded messages.
So, before we get started intothe meat of the conversation.
I would like you to introduceyourself to those who haven't
met you before and tell us aboutspecial family transitions and
about your boys.
Mary Ann Hughes (01:33):
Great Thanks, Sandy.
It's a pleasure to be here andhappy to be here for the third
time and hopefully more to comein the future.
But so my name is Mary AnnHughes.
I'm a mom of 2 kids on theautism spectrum.
I call them kids, but they'reyoung adults, but they're always
my babies.
And so several years ago I wasfaced with divorce unexpectedly
and made it my mission to getthe best result I could.
(01:54):
I managed to get through theprocess and got a good result
for my family.
but I decided other familiesshouldn't have to work so hard
to get through divorce andfigure out what to do to
navigate the process and what todo for their kids.
So I started Special FamilyTransitions, became a certified
divorce coach and now I helpother people who are facing
those challenges so they canfigure out what to do and save
(02:17):
time and effort also a specialenergy in the process as well.
Sandy Deppisch (02:21):
I love that you took what was extremely
difficult for you to walkthrough, I'm sure, a situation
that nobody wishes on anyone andyou turned it into something to
make a difference for otherpeople.
That's just so admirable.
I love it And I'm sure you aremaking a big difference for a
lot of people who probably, whenthat happens, it's usually
unexpected And oftentimes peopleare overwhelmed and they don't
(02:45):
know where to turn.
I'm sure it's hard enough foranybody, but when you have
children one child and you havetwo that have special needs,
have differing needs explainingall of that to them, trying to
help them through that whileyou're walking through it,
there's just so much involved.
So much to this.
Mary Ann Hughes (03:03):
Exactly So many pieces to figure out how it all
works together so that the endof the day, you come out better
and your kids are okay as well.
Sandy Deppisch (03:10):
Right, yeah, and you are doing well now .
Mary Ann Hughes (03:13):
We're doing great.
Yeah, thanks for asking.
Yeah, it was a long, hard roadand we've all learned a lot, and
I think that's how we learnthings in life.
We've got to go through somehard times.
I'm not that I wish hard timeson anybody, but definitely it
was a growing experience.
And here I am today talking toyou on a podcast when back in my
old life I didn't thought ofdoing that.
(03:34):
Yes, I was going to ask.
Tell us about the hat.
So the hat.
so you talked about having adiscussion, sharing some tips on
my recent vacation.
So, as a single mom, i made abig leap.
last year I took my firstairplane vacation with them, on
my own, without any help, andthat went well.
And so this time I decided togo on a cruise first time as a
(04:01):
single mom going on a cruise andI'll talk about how I manage
that.
So I got the hat for the cruisetheme and I got to also admit
it's been a crazy summer.
Literally this is the first daythat I don't have my kids with
me on a weekday, and so Ihaven't had time for my hair.
So that's the other secretreason.
Not so secret now, but yeah,thought to be kind of fun.
Sandy Deppisch (04:21):
Yes, I love it.
So back up for a second.
I'm still like stuck in thespot where you talked about you
took to both of your sons on aplane by yourself.
That to me is terrifying.
to think of taking my son bymyself on a plane I don't think
I have the courage to do that.
How did you do that?
How did it go?
Explain the process.
Mary Ann Hughes (04:43):
It went really well.
I mean, there's moments wherethings don't go exactly as
planned or expected, but we havebeen several airplane flights
before.
Okay, in the past, and the wayI prepared my kids for that was
I created social stories.
I think we've talked aboutsocial stories.
That may be a past episode, yes, but every time we go on
(05:04):
vacation I created a socialstory so we'd know what to
expect, where we're gonna bestaying, kind of what we're
redoing, so they know kind ofwhat's gonna be happening.
And the very first time I wenton an airplane, that was a very
scary time.
I wasn't sure how to approachthat, and so a lot of my social
story was about going throughthe airport, what it looks like
(05:25):
to go on a trip, expectedbehaviors at the airport and the
airplane And once we get to ourdestination and so, yeah, i've
been kind of taking that Everytime we do something new, i kind
of use that approach to kind oflet them know what's coming
next, what this like, so thatthey're part of the process.
Like, okay, well, this day mymom said we're gonna be doing
(05:45):
this Right.
As simple, as elaborate as yourchild may need.
Some people may use morepictures.
I combine text with pictures onmy download of off the internet
or maybe of us, of people thatmaybe we're traveling with or
going to go visit, so that waythey can see them ahead of time
too, as relatives they don'tknow.
Or if they do know them, it'skind of fun to look back on
(06:08):
those as a memory as well lateron.
And so yeah, so I carried thatconcept over.
Even in divorce, I use a socialstory to explain the divorce.
And so, and now for our crews,I had one of those as well.
Sandy Deppisch (06:23):
That's just such a genius idea And you have
shared that before and I haven'ttaken that into consideration.
And I really need to do that,because there are some times
where I'm exposing my son tosome new experiences and I tell
him about it, but the visual isso important.
And now I love Canva.
I don't know if you're familiarwith Canva, but now you can go
(06:44):
on Canva and just create wholevideos and add your text well,
not your texture voice to it, soyou can tell the story, and
then they could listen to thevideo and play that over on
their iPad.
So that would be a simple wayfor me to do.
I love that.
I hope you get a way to do that.
Mary Ann Hughes (06:59):
I haven't done that.
That's a good idea to do thatThat way they can.
They don't wanna read it on ahard copy.
You can just narrate your own,which is a great idea as well.
Sandy Deppisch (07:05):
Yeah, yeah, just the preparation, knowing what's
gonna come.
I remember with my typicallydeveloping kids when they were
little, I used to again, it wastelling, not visual, but I would
tell them this is what we'regonna do, we're gonna go to the
grocery store.
When we get there, this is theplan, here's what you will do,
here's what I will do, here'swhat your behavior will be like
when we're there.
And then in the car, i wouldtell them again, and then, when
(07:26):
we're in the store actuallydoing the thing, i would say
remember, we talked about thisand this is what you're doing
and this is great.
And then when we would leave onthe way home, i would say you
guys did it.
That was amazing And it came sonaturally to me to do that with
my typically developing kids.
But I'm just stunned that rightnow, even with you telling me
twice on the show how great itworks, i don't think to do that
(07:47):
with my son, but I will.
I will moving forward.
So, yeah, that's awesome.
So you felt empowered by thesuccess of the solo trip on the
plane and you took the cruiseWas that?
out of Galveston?
Mary Ann Hughes (07:59):
It was, and that's probably the reason for
going on a cruise and using thattype of route is you wanna find
a port that's convenient to you.
So I mean, granted, there'scruises that go out of West
Coast, east Coast Florida is abig hub for cruises and granted,
they have some nicedestinations that they go to,
but then you've gotta add a tripon top of a trip, and so that's
(08:21):
too much.
And so if I'm gonna go on acruise, at least in the
immediate future or near future,is gonna be out of Galveston.
I'm in Houston, so we justdrive down there, park and get
on the boat.
Basically, Now I will say thistime I did it differently.
I thought, okay, let me savethe trouble because there's so
many moving parts of doing this,let me get a ride to the
(08:42):
airport.
So I had somebody pick us up,drop us off and that works well.
So you can either do it as avolunteer or a paid service,
because really you're gonna haveto pay for parking anyway.
So just pay a little bit more,maybe, and have someone take you
, so whatever works.
And then if you are gonna takeyour car, then you find a
parking garage to park and thenthey have shuttles to drop you
(09:04):
off at the terminal.
So either way works out,depending on who you're
traveling with.
In the past we've traveled withextended family, like my mom and
her sisters or something likethat.
So I've had in the past and Ihad my spouse at the time, but
we had young with disabilitiesand we had older people to deal
(09:25):
with as well.
So it's managing that, but ifyou can.
But we learned our lessons, iguess, over the years.
So when you have an elderlyperson or someone who has a
physical disability, whateverage they might be, or any kind
of disability as well is, youcan ask when you first make your
reservation.
Let them know that and they'llbe in your record, as well as
(09:47):
any kind of dietary restrictions.
But once you get to the terminal, just go to the agent who's
standing there in the front ofthe by the main doors, and you
don't have to stand in the longline.
So they'll let you in.
And once you're in the terminalthey'll take you basically to
the front of the line So youdon't have to stand in the long
(10:08):
line for security, x-rays, allthe check-in process.
So basically, it was prettyamazing.
We were dropped off and by thetime we were dropped off to the
time we were on the boat, it was15 minutes, which is a Amazing,
that is unheard of.
Yeah, and so we chose an earlycheck-in time.
So I recommend that and youwanna do that for a couple of
(10:31):
reasons, and the biggest reasonto me is that you get on the
ship early and so, instead ofhaving your lunch at home, you
can get on and enjoy the ship,eat lunch while you're waiting
for your luggage to come on andgo to your cabin, and so that's.
Another tip is, if you don'thave very much to carry and if
(10:52):
you have two cases with wheels,it might just be easier to carry
them on.
But we checked ours in and justhave like an extra backpack
with you of things that youmight need for the first couple
hours until everything gets onthe ship to your cabin, which
they'll deliver.
But that helps.
And getting off the ship is wejust went ahead and took them
off directly because we hadusually we have overpack and I
(11:15):
have way too many bags.
This time we had limited it, sothat way we were able to get
right off the ship, get offquickly.
Once again, ask for the specialneeds type of provisions.
Even though my son's like, whyare you cutting in lime mom?
I'm like, no, we're not cuttingin lime, permission, it's okay.
So anyway.
So that helps Just a little bitof a time saver tip there.
Sandy Deppisch (11:36):
Yeah, i'm glad to hear that they have those
accommodations in place.
It makes sense that they would,but I never really thought that
through And the idea of tryingto take a child with intense
support needs, in our case ontoa ship like that was
overwhelming to me.
but it sounds like it's doable.
They make it as easy for you aspossible, which?
Mary Ann Hughes (11:58):
is really nice.
They do.
Yeah, they've been overbackwards just being nice to you
and helping you on any way youcan And how does.
Sandy Deppisch (12:05):
I'm sorry.
How does it go with the meals,because you can either do the
mind time dining or you can justeat at any time.
Did you sit down in the diningroom?
Did you do the buffet typemeals?
Tell us a little bit about howthat worked for you guys.
Mary Ann Hughes (12:17):
That's a great question.
So I gotta tell you, one of thefavorite parts about cruises
for one of my sons is the food.
I mean, if we're on a cruise,we're just enjoying.
We did both the phase dining,sit down, all kinds of things,
and you get your food reallyquickly.
And so I remember and this is,of course, as much as you want
whenever you want it, all kindof things And we get home I
(12:38):
remember him sitting at thetable saying food.
I'm like, yeah, i want my foodtoo.
Who's bringing it to me?
So yeah, we kind of get spoiledbeing on vacation and being on
a cruise.
but back to real life, thatdoesn't always happen that way.
So that's one thing we likeabout cruises, and so what we've
done in the past is forbreakfast and lunch we do the
(12:58):
buffet, because we don't like towait, and then for dinner we
have the reserve dining time.
That's really important to dobecause that way you're sitting
at the same table, you have thesame wait staff and you can put
in your special orders.
So they kind of know how yourfamily works and what you like,
(13:20):
and so that to me my familyworked out best.
I will say, on this cruise wedid a little bit differently
because we were part of a largergroup.
It was for my son's kind of agraduation celebration cruise
And so for dinners we would dokind of on your own time diming,
which I don't recommend forseveral reasons.
(13:41):
One of it's a large group.
It's gonna take you a long timeto get seated.
You've got to make your lookingfor that cycle Also like going
to a restaurant.
When your party's there they'llseat you and they got to find
the table.
Especially with a large groupit's hard to do.
And then part of that was oneof my sons was not happy about
having to wait and then havingto wait for their food.
(14:01):
Because if you order on thetable and you order what we
would do because we had dietaryrestrictions, so you end up
ordering the night before forthe next night's dinner, really.
So you're gonna get right away.
Sandy Deppisch (14:15):
Wow, I did not know that.
that's huge, That's veryhelpful.
Mary Ann Hughes (14:18):
Yeah, yeah, and then they go big ugly as well.
But yeah then, yeah, the longerdinners were a little harder
for us, so I brought a helper.
I figure, okay, there's a lotgoing on.
And I still wasn't comfortable,right, you know, as I would
have been on the.
Our plane train was wind of asa family, so it was more
controlled.
This one.
There's a huge ship and toomany ports and too many moving
parts.
(14:39):
I really wasn't comfortable atthis time going by myself with
my boys.
So that worked out well.
So I had a helper come with me.
I'm a caregiver And the way wedid that is doing two cabins
that had a joining room.
There were joining rooms And sowhich also gave us joining,
opening up the balcony.
So we had a really nice balconyAnd that was nice to have extra
(15:01):
space Grant.
In the past we've only traveledin one room, and it's fine.
This time I was like, okay, letme just spend a little bit more
, instead of all squeezing inone room, we can have two rooms
and enjoy it better.
And that worked out well.
We're gonna have our downtimeand so on.
So if you can do it, great, ifnot, one room works just as well
.
Sandy Deppisch (15:19):
Right, that's a really great idea.
I remember on our most recentcruise we did the my time dining
And, just like you said, wewaited many times in a long line
.
That was just my husband and I.
But the other thing about itthat was very interesting, i
loved it, but I don't think Iwould love it if we had our son
with us is that we sat at adifferent table every time.
It was wherever they had space,and oftentimes it was with
(15:41):
brand new people.
There would be eight people atthe table and we would just be
the joiners, right, and so itwas great for us because we had
conversations and met someamazing people, But I imagine,
with individuals who likeconsistency and structure and
routine and need to know what'sabout to happen, that's not a
comfortable situation.
Did you guys have your ownsmall table each time, just your
(16:03):
family and the caregiver, orwere you other people joining
you as well, because otherpeople joining us.
Mary Ann Hughes (16:09):
We did have that, so I would have preferred
that.
Initially, on my reservation,we had that, but it was in a
different dining room and itbecame too complicated to do So.
this time we'd be like, okay,i'll just kind of go with the
group, but I won't be doing thatin the future.
Actually, i would recommendthat if you're gonna go in a big
group, have all of you doreserve time dining And that way
(16:31):
you can really request a sitdown or at least or have one
table at that time.
That way you're avoiding thelong ways.
And you mentioned aboutconsistency and routine.
That's one reason my familyloves cruises.
It's basically a resort on theship right on the sea, and so
everything is consistent.
You've got the same room,you've got the same hopefully
(16:54):
table waiters.
You kind of know what to expect, what the routine looks like.
But it's nice.
You have variety in terms ofmaybe on the ports, getting off
and seeing different things.
But everything else is kind ofthe same and consistent, and
that's part of the appeal of acruise, opposed to a vacation
where, like each night, whereare you gonna stay?
What are you gonna eat?
(17:14):
Trying to find food that yourkids will eat.
I know when we've done that inthe past.
Sometimes it works well,sometimes it doesn't, because my
son is kind of pee and notevery restaurant is gonna have
what he needs or what he decideshe wants to eat in a vacation.
Sandy Deppisch (17:27):
Those are really good points.
So the next thing that'sswirling through my head is what
about all the sensory stuffthat happens on cruises?
because there's nonstopentertainment.
I love that.
They give you the calendar onthe app all the activities that
are available to you, andoftentimes when you're just
walking through the ship, it'snoisy.
There's a lot of lights,there's a lot of action.
How do you handle that if youhave a sensory sensitive child?
Mary Ann Hughes (17:52):
Yeah, so what we have been doing for years is
my son will carry his headphones.
In the past it was harder toget him to use them.
Now he'll put them on when heneeds them.
So we always have them on ourperson And when three times we
forgot them, we had to run backto the cabin to get them.
But I would have those if youneed them.
So the way we tried to do it iswe didn't go to the really loud
areas as much as we could.
(18:13):
I mean, granted, sometimes youhave to cut through the casino
or whatever.
That's kind of crazy.
But we tried to find spots,like in the buffet area, that
were more quiet And that's sospread out that really it's not
a problem.
You can get your food donepretty quickly, except the
exception on that is theMongolian grill.
Whenever we seem to do that oneof my sons loves that You're in
(18:35):
line forever, especially ifyou're on a port day.
I guess watch us a sea day.
But if you're on a port day, ifyou do it at the right time,
you can get in and out quickly,which my son tried to do, and it
was still a long line Anyway.
So we carry the headphones Andthis year they were old enough
that we were able to go to thecall it on the Chronicle, the
Serenity Deck.
So the adult age With the pool,in our case this ship, it was
(19:00):
just the hot tubs, but it wasnice because when you go to the
main deck and the big pool ifseveral main pools, they're
really loud You got kids runningaround, people drinking, all
kinds of commotion going Andthat can be too hard, especially
around the water slides and allthat.
So we found that it's a nicelittle escape to be able to go
to that other area.
(19:20):
And then if your kids areyounger you can't do that.
That's the first time we'vedone that.
So yeah, just kind of findtimes off, peak times to do that
.
And then that kind of leads tothe discussion about excursions.
So in the past we never did aship excursion because we
thought that would be too hardto manage, too much sensory and
big group and try to get up andcrowded places.
(19:44):
So in the past we would eitherjust get off the ship and just
walk around.
If a support where you could dothat Or what we did, especially
when we traveled with elderlyfamily members, is we would
ahead of time hire a van, book aservice that they would take us
around, and that way they giveus a private tour.
You're not in a rush, youalready arrange what you're
(20:04):
going to be doing, you have aset price And that just makes
life so much easier.
This time we thought, ok, let'stry the excursions for the first
time, and the main reason forthat is my son wants to go to a
place in Chichen Itza.
He's really into thesearchaeological sites in Mexico
and attractions and so on, andso there was no way that on our
(20:25):
own we could have done that andguaranteed to be back in time
and not have the ship leavewithout us.
So the nice thing about shipexcursions that they'll wait for
you, right?
if the bus is running late,they're not going to leave
without you.
So we don't want to take thatchance.
We went ahead and did it.
It was actually a nice trip Andwe enjoyed it.
Now I will say it was hot.
So he wasn't expecting that AndI'm glad we did it.
(20:48):
And what I'd recommend also isbring plenty of snacks with you,
not be what your child will eat, either on the bus or when you
get to your destination, andjust to make sure that you have
enough water and things likethat.
So that was the one day I think.
Two trips we took with anotherexcursion just to keep it low
key.
So we don't want anything liketoo many moving parts.
(21:10):
So we did an open tour bus ridekind of thing, taking one to
different sites and things andgoing to the beach.
That was kind of a lot.
There were moving parts on that.
So maybe I would have maybedone something a little bit with
fewer moving parts on that.
But yeah, that was the one dayafter one of the excursions that
(21:31):
I think, as of the long day andnot having enough snacks or
water and just all the activityhe did get worked up that day.
So I'm glad especially that dayI had help to help calm him
down.
But overall everything wentreally well.
Sandy Deppisch (21:46):
That's excellent .
These are all such great tips.
I was curious about theexcursion, so I'm glad you
talked about that, because it'soften difficult to navigate.
Just the ride to the placeyou're going to end up at Can be
long And yeah, and there's alot of pieces to all of that.
So, yeah, you've got somereally great tips there.
Not that you're probably evenaware, because I know.
(22:08):
When my son was younger, i usedto be hyper focused on what are
people thinking about us inthis moment, when there's maybe
a meltdown or when things aren'tgoing well.
Now I don't even notice it.
It's just like I'm involved inwhat's happening and I'm more
concerned about making sure myson is calm and calming down
than being concerned.
But how were other people onthe cruise towards you and your
(22:32):
family?
Were there?
was everybody kind and gracious?
I mean, the staff obviouslywere, but did you have anything
that maybe wasn't pleasant And,if so, how did you deal with
that?
Mary Ann Hughes (22:41):
No, so I think overall we had a pleasant
experience.
Like you said, everybody on theship was great.
Once in a while people mightgive you funny looks But, like
you said, as you get to acertain age you don't really
care anymore, right?
So that's a black and white.
for somebody recently dealingwith diagnosis is it doesn't
matter if people think of you,just worry about you and your
(23:04):
child and getting through thatmoment, having fun.
But people, if you want, youget to the time to educate them,
if they have a question, or ifyou want to share, but don't
feel like you have to share,right, people may overshare or
sometimes it's helpful.
I've had people come up to me.
This was an occasion situation,but one time my son had a
meltdown at Costco And so I hadpeople both give me looks and
(23:26):
also ask me if I needed help.
So it depends, right, you canlook at it as an opportunity to
educate them about a disability.
It may not be a visibledisability, right?
I mean you look at my son, youwouldn't know It's a disability.
You're wondering why is this16-year-old on the ground having
a fit?
So, yeah, you just learn tokind of roll it, do what you can
(23:47):
get through that moment andthen move on.
Sandy Deppisch (23:51):
Yeah, exactly, and so it sounds like it was an
amazing trip.
You think you'll do anothercruise.
Mary Ann Hughes (23:57):
Yeah, i think so.
I think next time, though, wewill do the reserve time dining,
and yeah, this one was group,so I think there were a lot of
moving pieces there, so I thinkmaybe just a smaller group or
just our family might be abetter way to go on that.
But for people who are kind ofafraid to do it by themselves,
(24:18):
there's a company called Autismon the Seas that will support
you and help you and providecaregiving, assistance and group
meals and respite, so that theparents can also have some
downtime.
Sandy Deppisch (24:32):
That's so nice.
Mary Ann Hughes (24:34):
Yeah, that's why I brought my helpers.
You're constantly on watch,especially on a cruise, And I
needed like, if I'm going onvacation, I want it to be a
vacation, have a little bit ofdowntime.
Thanks, right, And we'retogether.
But for the few times I neededjust time alone or just to walk
around the shops or go get mypictures.
I knew somebody was there.
Sandy Deppisch (24:52):
My kids were going to say Yeah, that's a
really great idea to bring ahelper along with you.
So tell us about your boys andthe transition that both of them
have just gone through, andwhat life looks like for all of
you moving forward.
Mary Ann Hughes (25:06):
Yeah.
So both my sons graduate fromthe respective program.
So my older son aged out ofpublic school.
He's 22 now, so that's the endof official school where IEP is,
and all that.
And so for some time I had beenthinking about what the next
steps would be, and a few yearsago when I was in my divorce,
(25:26):
trying to investigate differentoptions.
So I had looked at differentones and honestly I knew some
were not going to be right forhim and some I didn't know if he
would be able to get into orhow it would work out.
So luckily we applied to one,had a trial and it was
successful, and so we're stillwaiting on our start date.
(25:47):
It should hopefully be in justa few more weeks, but we're
excited for that date programwhere they're really active with
them taking them out to thecommunity.
So it's not.
I mean, some depends on yoursituation and what you're
looking for.
There's some and you have to goto go visit them So see what
they're like.
Right, that's the best way tomake a decision is see what they
(26:09):
do and see where you and yourchild you know if you'll come
with that You can always make achange too.
So you know, i joke that everyyear we have to reevaluate and
kind of make plans for the nextyear.
I think that's still going tobe the case, right, right, and
maybe you know, things willchange, people will develop in
different ways, and so, yeah,that's the hard thing is knowing
(26:32):
.
There's not one right answer.
Things can change for whateverreason.
So, yeah, kind of go with whatyou have and the best choice for
now, and if it's not the rightchoice, then you'll know, and
then you can make changes later.
And then my other son, myyounger son.
He was able to get into aprogram at the University of St
(26:56):
Thomas.
He was in the first class atthe time where they developed a
program for students withlearning differences, and so it
was a two-year associate programand he just finished data And
now citing news where they'regoing to start a bachelor's
program as a continuation ofthat.
So he's going to be the firstclass of that bachelor's program
(27:16):
too.
Sandy Deppisch (27:18):
That's so exciting, Oh my goodness.
So what is he studying?
Mary Ann Hughes (27:22):
So it's a program that you study.
It's kind of like a I don'tknow if I know, but it's like
classes across the board,everything from pays into urban
planning and emergencymanagement.
So they got some of thoseclasses the classes for other
interests as well, somepolitical thing So they have a
set curriculum, but you can also.
(27:43):
What they've introduced now aspart of this bachelor's program
is you can select a minor And sowith that you'll actually take
a regular university class.
Wow, so that's something newfor us.
So it's so fun to get to knowhow that will look.
So you'll take maybe one classin that minor in the general
population, as you're stilltaking the ones in your cohort.
Sandy Deppisch (28:05):
Okay.
Mary Ann Hughes (28:06):
Where you're in the set set, set, set set
curriculum, so that makes it fun.
Sandy Deppisch (28:09):
Wow, yeah, that's so exciting.
Well, so back up to your olderson that aged out of school, so
it's a day have program thatyou're speaking of.
So talk a little bit about that, because how did you find I
mean, you say you have to govisit them How, if you're in
this situation and you need tofind a day have, like that, how
(28:29):
do you go about researchingthose?
Where do you?
does somebody present you alist and say here are the ones
in the area?
do you have to Google ityourself?
Like, how did you start thatprocess?
Mary Ann Hughes (28:37):
That's a great question because it's hard to
get that list And everyone isgoing to have different
recommendations.
So one way is to ask at school.
There should be a transitionspecialist there And that person
did provide some names of someplaces that they recommend.
maybe they visited them, theyknow about them, have had
(28:59):
success sending people there.
You know, after school I foundthat list wasn't really
comprehensive and maybe not upto date with some of the maybe
more recent and new programs outthere, but definitely it's a
start.
You know there's a lot ofFacebook groups, as you know.
(29:19):
As you know that we're on wherepeople will provide information
.
It was my intent to try to sharea lot of that information and
what I will do in the future.
So I've shared informationabout like college programs and
post high school programs foreducational ones that I haven't
done the day have once.
But all the ways I learnedabout them, as well as going
(29:40):
through resource fairs SometimesI'm presenting at those and
sometimes I'm just there justlearning And even the ones I'm
at, i select to walk around tothe different booths and meet
different people and learn aboutthe different resources.
But yeah, there's still so manyand I have learned about, you
know, ones that are not on thisby going to these resources,
(30:01):
these resource fairs.
So there's, there's privateones, there's public ones,
there's church based ones,there's different things out
there, So no-transcript.
And also I've had luck whereour transition medical
transition clinic.
The social worker thereprovided a list and that was a
(30:22):
pretty comprehensive list aswell.
So I'm happy to provideinformation and you can connect
people as well to some of thoseAnd I'll go ahead and put them
together eventually.
That has different lists and soon and how to reach them.
But yeah, there's so many outthere And so some of them, like
I mentioned, some will takewaivers or waiver, yes.
(30:43):
So that's another consideration.
You know you wanna wait forthis for years and years and
they don't always come up whentheir child ages out of school.
So then you gotta figure out,okay, what can you do?
There's some of them will takeprivate pay, but some of them
won't.
There's also through your LIDA.
So ours is Harris County, theHarris Center, where they have
(31:06):
some programs.
So you have to apply ahead oftime all these things you gotta
do ahead of time.
So start thinking at least afew years before.
And so, whichever LIDA that youwork with, let them know, if
you have a case manager and ifyou're not ready in that system,
you know, get signed up,because you don't have to be
part of the waiver to do that.
There's another way to get intothe system directly through
(31:29):
those organizations, and so theyhave things that they can offer
as well.
So that was a long answer to aquestion, but there's so many
resources out there and there'snot one central database as it
gets to the problem.
Sandy Deppisch (31:40):
Right, right.
And so when you went to visit,you call them, make an
appointment, i assume Did you goby yourself, did you take your
son with you to see how he feltabout it?
What did that look like?
Mary Ann Hughes (31:50):
Yeah, the first time I went by myself I
researched it, kind of went tothe website, kind of learned a
little bit about them And forthe ones that were interesting I
would make appointments to govisit.
And so usually they're realgood.
Sometimes they do group tours,sometimes they'll do individual
tours, so depending on thelocation.
And then a couple of them, ithought that I liked I brought
(32:11):
my son for an appointmentbecause they left to screen them
And so at the time I was goingthrough divorce, for instance,
like a you know Brookwood whichis like the premier place, i
took him to Sisi and they'relike no, we can't really accept
him based on his behavior.
So you have to go to the rightfit.
I mean some, i mean you're allsupposed to be for disabilities,
but there's different levels ofcare and then the population
(32:34):
and the type of individuals thatthey can best work with.
And so that was reallyfrustrating.
It's like you know, what do I do, right, you know, this is even
the private pay.
One won't even take them, andso that's what was real weird
about what the future would hold.
And so, luckily, he's made somuch progress over the years.
That's not the one we're goingto, but two years ago he wasn't
(32:55):
going to be a fit this other onethat we visited And now he made
so much progress over the yearsat school that now he is a
candidate for that.
And so part of that is, whileyou're in high school, be sure
that they put your child in aprovocational type program,
transition type program, wherethey go out into the community.
(33:16):
They learn the skills even inthe classroom about how to do
different tasks.
But the longest time theydidn't want to put him in those
programs.
They're like no, he needs towork on behaviors.
Like well, okay, well, we'reonly going to get so far with
that.
We have to have some skills now, and so, luckily, this past
year he was able to be in a 18plus program.
They have different levels ofthose in my district, and so two
(33:38):
days a week they will go out inthe community, like to the food
bank and places like that Andthey would learn those type of
skills, and so I think thathelped him a lot to show that he
could be in this other placewhere they also do things like
that.
Sandy Deppisch (33:51):
Right, yeah, that's fantastic.
Those are excellent programsand they definitely have their
place in the schools for thosewho don't want to leave the
school at 18 and they want tostay in until they're 22.
Those are the 18 plus programsare amazing.
Mary Ann Hughes (34:04):
Yeah, well, i have one thing on that.
So I've heard from a lot ofparents that they're getting
pressure from the schooldistrict to leave at 18.
And so, no, it's your right tostay.
So just keep that in mind.
I mean, it's your decision.
But I've seen a lot of caseswhere we're saying, no, you're
best leaving, and so if you'regoing to do that, make sure
(34:25):
there's something out there.
Make sure you've looked at whatthe next step is, because you
don't want to just kind of falloff a cliff at 18.
Like now, especially if youdon't have funding.
What do you do?
You don't want to just graduateto the couch, as they say,
right.
I mean, i think to see too manyposts of people like that.
They're just like a child athome, a young adult, and there's
not a place for them to go Andthey're just not doing much, and
(34:46):
that's.
We don't want that.
That's kind of sad.
Sandy Deppisch (34:49):
Right, exactly, that's a very good thing to
point out.
So if you are getting pressureto leave at 18, start planning
at junior high what the plan isgoing to be, but also advocate
for your child.
Like you said, it's their rightto be able to stay until 22.
So don't feel that pressurethat you have to leave.
Yeah, again, you just have sucha wealth of information.
You're going to have to do somemore amazing adventures so you
(35:10):
can come back on and tell us howwe can navigate those in the
future.
But for those who want to reachout to look at your website and
to find out what you're doing,i know you've done a course
recently.
Tell us quickly about that Andthen I will link in the show
notes all of the resources thatyou share with us so that people
can find you.
Mary Ann Hughes (35:26):
Yeah, i appreciate it.
So my website isspecialfamilytransitionscom and
you can find me under all socialmedia special family
transitions, and so the coursethat you're referring to I
appreciate you mentioning thatis a one hour mini course of the
top tips you need to getthrough divorce when you've got
a child with disabilities, to besuccessful in a special needs
(35:49):
divorce.
So I took my knowledge, myexperience, things that I
learned, as well as my learningsas a coach in a really low
price, quick, easy digest formatso people can kind of figure
out what to do and then figureout what their next steps need
to be.
So I have also free resourcesas well and I can also offer
one-on-one coaching based onyour situation.
(36:11):
But, yeah, definitely, thatcourse is such a low price point
and I think it's a Let's, let'stap or anybody who's going
through that I did want to addto.
So on my cruise although I didhave one day where I woke up
early and Was able to stand onthe balcony and make little mini
videos about some of the tipsthat we discussed and some more.
(36:32):
I haven't posted them yet, butI will, so look for those.
I'll try to Also send you alink when those are ready.
Sandy Deppisch (36:39):
But so yeah, it's kind of fun to what a great
idea Yeah, yeah great idea tomake a video and and back to
your course.
So I would think that that's agreat first step for people,
because I'm sure there's a lotof apprehension and fear and
overwhelm, and so Havingsomething like that to say, okay
, i can breathe, here's someactionable steps I can take, but
(36:59):
then to reach out to you andhave a hand to hold through the
process from somebody who's beenthere, who can coach you
Through, i think that would beinvaluable.
So I love that you offer thatservice.
I hope that nobody ever has touse it, but I hope that if they
do, they come to you.
Mary Ann Hughes (37:15):
Because I'm not , you know, saying people should
get divorced and I advocate forit.
I'm there.
If you're facing divorce forwhatever reason you mentioned
earlier in the conversation,which was my case as well, is
that sometimes unexpected?
but sometimes it's the mom whoReason things you know aren't
right in the relationship.
There's a lot of issues that alot of times women are the ones
(37:35):
who file for divorce, and so Youknow you want to do what's me
right for your child, andsometimes being in the home That
doesn't have all the stress andconflict is better for that
child.
I think it's hard for real tosomeone else to really accept
that.
But but really you know Youwant to do what's best for the
child else, for the child first,no matter what, and then you
know How can the mom and dad getthrough this process to do
(37:58):
what's best for the child andthen co-parent effectively.
That's that's the best you knowsituation.
Sandy Deppisch (38:03):
Exactly, and and the rate of divorce among
special needs I heard somethingrecently around among families
that have an Individual specialneeds is like 87% Eight.
I don't know if that's real,that's what I saw on somebody's
post, but that's staggering.
And So, yeah, people definitelyneed support to work through
that process and, and like yousaid, to get to a healthier
(38:25):
place where There's not chaosand there's not stress, because
the the needs of the child needto come first.
And, yeah, i love your outlook,i love your perspective, mary,
and you are delightful, i lovehaving you on and I definitely
will invite you to come back onagain any last tip or word of
wisdom you want to share with us.
Mary Ann Hughes (38:43):
Yeah, just make time for you.
So part of the reason for thehat is I haven't had time to
take care of my hair.
I just have fun for the, forthe, the cruise theme.
But, yeah, take care ofyourself, to cure your kids and
you'll be okay.
Yeah, every day, you know, welearn something.
We help our kids get better andwe get better along the way as
well.
So absolutely.
Sandy Deppisch (39:02):
Thank you so much for being here.
It was a joy having you.
Thanks for listening to theembrace the blessing podcast.
Visit Embracetheblessing.
com/ podcast for show notes andlinks to any resources mentioned
.
If this has been beneficial toyou, please share it with a
friend or post it on your socialmedia pages.
Join me next Wednesday for moreinspiring stories from people
(39:26):
just like you.
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