July 8, 2024 • 20 mins
Imagine feeling less isolated and more supported in your journey as a parent of a special needs child. That's exactly what you'll gain by listening to our latest episode of the Special Parent Podcast! Through heartfelt personal stories and practical advice, we unpack the complexities of building a balanced support system. Discover how to manage the logistical challenges of outings, set healthy boundaries, and create a social environment where your children can truly thrive. You’ll hear a touching story illustrating the transformative power of simple acts of kindness that will warm your heart and inspire you to strengthen your own community bonds.
We also provide valuable strategies for teaching your child to recognize positive interactions and set necessary boundaries. Listen as we share experiences with both helpful and misguided advice, including a distressing encounter with a doctor’s bad advice. Learn the importance of connecting with fellow parents through therapies and support groups. Lastly, we emphasize fostering an inclusive and accepting community, offering insights on how to let go of what doesn't serve this purpose to build a village filled with love and acceptance. Join us for an empowering conversation aimed at creating a stronger, more understanding community for all.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
This program is made possible by friends and partners
of the Special Parent Podcast.
Speaker 2 (00:05):
I believe that empowering parents of special
needs children is like givingthem the superpower of
unconditional love andunbreakable determination.
They are not just parents, theyare true champions, shaping a
bright future for theirincredible children.
I'm Dr Deanna Iverson and I'mglad you're here, dr Deanna
Iverson, and I'm glad you'rehere.
(00:26):
Hello everyone, and welcome tothe Special Parent Podcast.
This is Dr Deanna Iverson.
Today we're talking aboutbuilding our village.
Do you or your child ever feelisolated or alone?
Because I know I have, and somany times where I'm going
(00:47):
through something and I don'teven know who to call.
I don't know who to call whowill understand.
Sometimes I know I can callsomeone who will listen, but
then they don't know what to sayand that can even make me feel
more isolated and alone.
So I want to talk to you aboutbuilding your village, creating
a community of family andfriends.
First of all, this is notalways easy.
(01:13):
It's a struggle of trial anderror.
We have friends for lots ofphases in our life and for lots
of different activities in ourlives, and we have family, and
sometimes friends and familydon't know how to support us or
that's just not their skill set.
They're not going to be thereto support you and sometimes
they're the champions and theywant to be along every road with
(01:35):
you.
But then having them thereevery single time or on top of
every single thing can almostfeel daunting or it can almost
feel like too much pressure.
So this isn't easy.
We've all struggled to findthat balance.
What is the balance betweenwhat I and my child need
socially, what we need in thesupport systems of our lives,
(01:59):
and when do we just kind of needa quiet break and it's okay to
be a little bit of isolated andquiet time to ourselves?
So we have to learn how toincorporate people into parts of
our lives and create thoseappropriate boundaries for
ourselves and help our childlearn how to create their own by
helping them to create theirown.
(02:20):
Our children enjoy so muchbeing out and about.
Our children enjoy so muchbeing out and about.
So if we can build them acommunity that can help them be
out and about and in a socialworld and able to travel and
able to go on vacations or ableto go to amusement parks or the
park, if we can build acommunity around us that can
(02:40):
help us do that, then we createthat happy, joyful parts of life
.
We create those for ourchildren and that's really
important for their development.
So let's admit it to ourselvesit's not easy to go places.
You watch any mom with any childand there's always stuff
Someone's toting around withthem.
So then you take a mom with aspecial needs child.
(03:02):
That tote bag gets a littleheavy.
It sometimes can be like a bagof bricks.
There's the stuff you need,then there's the sensory stuff
you need, then there's thebehaviors.
We all know that we don't leavethe house without pre-thinking
out okay, if A happens, thenwhat am I going to do.
If B happens, then what am Igoing to do?
Maybe we have adaptiveequipment that we need so that
(03:26):
we can be successful or can havea good time, and that adaptive
equipment of course needs stuffto go with it, and we need
someone to help us heave, ho itin and out of the cars and those
kinds of things.
We might need some extraclothes.
That stage ends for a lot ofparents.
But, maybe those of us withspecial needs kids, that stage
(03:51):
doesn't really end.
We might need different typesof food or specific types of
food, because even though we'regoing to be going out to a
family's house for dinner, weknow that our child's just
either not going to be able toeat something or we know that
they are going to have areaction to some sort of food,
so we have to take specialtyitems with us.
So can we ever really relax?
(04:11):
I want to say yes, yes, you can.
Whenever you leave the house,we're all on display.
Let's admit it.
Every parent out there leavesthe house and is somewhat on
display Because as we navigatethis world around us the grocery
store, for example and do thesekinds of things other parents,
other people they see us.
(04:33):
They may not be intending towatch or to judge, but it's
there.
We can expect a range ofreactions from that awkwardness,
the awkward staring.
We can expect insensitivecomments though I'll tell you
they probably didn't mean itthat way and hopefully we can
plan for some encouragement, Iwould say, as special needs
(04:56):
parents, as we navigate thisworld around us, if we see any
other parent special needs ornot, any other parent out there,
and we notice that they'restruggling, we can give them a
wink, a smile.
We can walk by and say you gotthis.
We can walk by and be like, ohso there with your mama, keep it
up, keep it up.
We can be there for otherpeople.
(05:17):
We can offer that encouragementand as we start to do that,
other people that surround usare going to hear it and they're
going to want to offer it toothers too.
A community can help.
So once my son was having ameltdown in a store.
Shocker right, my child withautism and a behavioral disorder
(05:38):
having a meltdown in a store,oh yeah.
And it was one of thosesituations where, when that was
taking place, the employeestarted walking by and he
literally stopped, smiled andsaid, hey, you guys are so
amazing, you got this, you'rewelcome here anytime.
And then he kept going, whichat first just threw me off my
(06:02):
guard completely.
I was like, oh my gosh.
But then I wanted to, like Iliterally want, before I left
the store, I just wanted to hugthe guy.
I didn't, don't worry, I didn'ttackle and hug.
I didn't tackle and hug, but Idid mention it on my way out the
store to the manager when I waschecking out, I said, hey, I
want you to know so-and-so.
(06:27):
This is kind of what he lookedlike.
Can you please just go tell himthank you, he is an awesome
employee.
So I wanted to share thatlittle nugget of how much that
encouragement meant to me andthat's why I've decided I'm
going to try to encourage othersas I navigate this world around
me with my child.
So sometimes I just want toblend in.
I'm sure some of you have feltthat way before too, where you
(06:48):
just would like to be able to goto the store and have no one
notice that you're walkingaround the store or, you know,
have the kid who's sitting thereeating the carrot in the
grocery cart and everyone's like, oh, what a cutie pie.
And you're like, yeah, I canfeed him anything and he just
sits there and eats his carrotand is a happy lark, versus the
kid who you try to feed him hisfavorite snack and he flings
(07:08):
applesauce across the aisle.
So I guess I'm speaking fromexperience, because these are
real world examples that I'vehad and I would just love to
blend in.
Sometimes it would be easierjust to be neurotypical, but
we're not.
So one of the things I learnedto do was I embraced standing
(07:29):
out.
I embraced the fact that we'renot going to fit the norm and
we're going to have situationsthat could be embarrassing if I
allowed myself to be embarrassedand that's what took place for
me.
So what that means is that Ican relax.
I can relax because I'veaccepted that it's not going to
(07:52):
be easy, just normal as I walkaround.
I've accepted that I'm notgoing to blend in every time.
So instead of preparing andbracing for it in a negative way
, I more try to remind myselfhow important it is to laugh.
We all have times in our lifewhere we just have mistakes that
(08:15):
take place and we have twooptions of how we're going to
respond to that.
And whenever I'm trying tosurround myself with a community
, I make sure that I'm part ofthat community for other people
and therefore I welcome theminto mine who can just find
laughter sometimes in thestruggles of life.
(08:36):
So there is a mom, a mom's storyI wanted to share with you
another special needs mom andshe had a family member who
judged the actions of her childand her as a mom.
She had a family member whojudged not only the actions of
the child but then her as a momand how she responded to it.
And so what happened was shehad gone to a family event and
(09:00):
she had told this.
A family member like hey, this,this is how we need to act,
this is the way that we need tobehave, um, with my child.
This family member didn'tlisten to her suggestions and
it's like oh, that just makes usall want to.
Oh, the family member did notlisten to her suggestions and
(09:21):
it's like, oh, that just makesus all want to.
Oh, the family member did notlisten to her suggestions on how
to handle her child, and sothings didn't go right and the
child had the meltdown and theydecided it was best to leave.
Upon them doing that, thefamily member called and was
very judgmental on how thingsdidn't go well and the way the
(09:42):
mom should have done thingsdifferently to ensure that they
did go well.
So I thought about that story.
I thought about the times thatI've been in similar like
situations and I think we've allkind of been there.
But I'll promise you right nowwe're going to get through it.
The way we get through it is wesurround ourselves with the
people that really do support usas we trial and error this and
(10:03):
the errors hurt, but there arewins.
We're going to find people thatcan be really great listeners
and know what to say at the end.
We can find people that can bereally great listeners and
sometimes know how to challengeus at the end.
Sometimes we need the challenge, even when we don't like it.
We can find people that justare like, hey, let's just go out
(10:24):
for a little while.
Someone who will maybe inviteus over to their house or be
willing to go to the park withus and be okay with the awkward
moments around us and be the funfriend.
We can find someone who issomeone who's willing to help us
.
I remember when my son waschecked into Phoenix Children's,
I had a friend who would bringme Starbucks every day.
(10:45):
Yeah, it was close to her work,but it wasn't like it was on
the way she had to park, ridethe elevator to the floor, give
me the Starbucks, stay with mefor 30 minutes and talk and then
she's like all right, if you'restill here tomorrow, I'll see
you then.
And it was that idea of just.
She knew that I was goingthrough stuff and she knew she
(11:06):
couldn't fix it, but she knew Iloved my Starbucks in the
morning and I wasn't going toget it while my son was in the
hospital.
So there she was for me.
So start surrounding yourselfwith people like that and then
you can start helping your childfind similar people.
As your child interacts withsome people, it's really good to
say this is a good friend thatyou have fun with.
(11:28):
Did you notice how you had funhere?
Did you notice how, when yougot upset, this friend helped
you in this way?
So that helps your child.
Start to learn and see how theinteractions of other people can
impact them and how they canwork with others.
You can also even say thingslike hey, did you notice how,
when we were doing this activitywith so-and-so, they didn't
(11:52):
respond well?
And maybe your child's like no,I didn't say that Well, I did,
and so we're probably not goingto hang out with that person as
much.
Or I'm going to have a talkwith their parent and see if
it's even appropriate if we hangout again.
So help your child learn thatit's okay to we're not going to
get along with everybody andit's okay to have those
boundaries, because we as adultsknow we've had to do that many
(12:14):
a times in our lives.
One of the things I got fromone of the books that I've read
is you know, we may be paddlingup the same river, but not in
the same boat or paddling withthe same equipment.
Most people have a lot of advicebecause there's a lot of
parents out there and they'retrying to help, but not always
is advice very helpful.
(12:35):
So when people give me advice,sometimes it doesn't come across
as advice, it comes across ascriticism, but I'm just going to
choose to put it in the light.
When people give me advice, ithelps to find peace that I
believe that their advice isgood quality advice from some
sort of experience.
It just may not be good for mykid, but since it is good
(12:58):
quality advice from their somesort of experience or their
research or their thoughts, orthey read on some book about
ADHD or autism or behavioralproblems, what you can say is
thank you, I really appreciatethat.
I'll think about it.
You may know it's not going towork for your child.
(13:18):
In fact, you may have alreadytried it.
If you're like most specialneeds parents, you're trying
everything out there.
You may have already tried it,but sometimes it's just easier
to say thank you, I appreciatethat and move on from it.
When you're the parent, youdecide what advice is best to
follow and what is not.
But those friends, those peoplethat surround you in community
(13:42):
and really are trying to givehelpful advice, let's thank them
for it and move on from there.
So I had a doctor give me someadvice one time.
That wasn't helpful.
So I'll give you an example.
He was a GI doctor and my sonwas refusing to eat.
He was on a feeding tube andnot eating, and we were trying
(14:05):
to figure out lots of things,lots of details to this story.
However, we took him just for asecond opinion because we
weren't seeing much success.
I talk in a previous podcastabout therapies and therapists.
We weren't having a lot ofsuccess with the feeding therapy
.
He wasn't making a lot ofprogress during this window of
time and I wasn't as patient asI maybe should have been.
(14:28):
I thought, well, let's asksomeone else, let's see what's
going on.
And this doctor said you know,if you just stop tube feeding
him, he's going to get hungryand he's going to eat.
He's old enough.
So we were like, well, let'stry it, let's just go home and
try it.
So we went home and it was twoand a half days, two and a half
days, of not feeding him throughhis tube, two and a half days
(14:54):
of him not eating and whewprobably heard that in my voice.
As a mom, that was hard.
I started to notice a change inthe way he looked.
I mean, he was a young child,so he wouldn't do anything, he
wouldn't eat, he wouldn't drink,and my husband and I were like,
oh my gosh, our son is hurting,we're hurting him.
So we immediately startedfeeding again, we immediately
(15:17):
started doing everything anddidn't call, didn't go back to
that doctor again.
But we're like, well, we triedit.
Boy, was it not successful.
Boy, was it not great.
It was some bad advice, butsometimes you're going to get
that bad advice from reallygood-hearted, well-intentioned
and really intelligent people.
(15:38):
It's just not going to be rightfor your kid.
Now I'll tell you that therewas a person in our world at
that time that threatened tocall Child Protective Services
on us because of what we weretrying to do under a doctor's
advice.
And that's when we learned theimportance of not sharing
everything you're doing witheverybody in your circle,
(15:59):
because we may be paddling onthe same river, but we may not
be on the same branch of thatriver.
We may not be in the same boat,we're not as far along, we're
definitely not using the samepaddles.
So this river of life, as youstart to pick and choose who's
in your circle, it's going tohurt real bad sometimes when
people have to be pruned out ofit.
(16:20):
But it's an important thing tolearn is that who we need to
share things with and who wedon't.
So I'll wrap it up with sometips and tricks.
I'm sorry I've done a lot ofheartfelt talking on this one.
Get involved in therapies tohelp you meet other parents.
Other parents are going to besome of your best connections,
(16:43):
some of my closest friends thatI can talk to just about
anything with when it comes tomedical therapies and my son are
other special needs moms.
We may not share every aspectof our lives together, but I
know if I call them and I wereto tell them about what I did
with the feeding tube, I'd getbig hugs and, oh my gosh, girl,
I know how you feel.
I've done something similar.
(17:04):
So if you get involved intherapies, if you start reaching
out to special needs groups, ifyou get on social media with
special needs groups I don'tsuggest sharing your life on
social media, but get on thereto make connections.
That's so healthy for you.
Be out and about even when it'sexhausting.
Do it when you have the energy.
Do that self-care that I talkedabout in my other podcast to
(17:27):
build up that energy.
Have productive conversationswith people and help them learn
how to be supportive.
We're not going to get throughto everybody, but sometimes,
like when we were in arestaurant the other night, my
husband and I were just enjoyingdinner and the waiter comes by
and starts talking and he says,oh yeah, my son has autism.
And we were like, oh, and welit up and all of a sudden the
(17:47):
waiter's our new best friend.
So it went from we were out andabout to having a productive
conversation where we made aconnection with someone.
I've had conversations beforewhere I've said to someone, hey,
that's just not going to workfor my son and I can explain to
you why and I've had tworesponses.
I've had the oh, I hear you,all right, thanks for explaining
(18:10):
it.
And I've had the other responseof well, but, and it's like,
okay, so we're not going to getthrough to everyone, but when we
do, we've made an impact thatwill impact everybody in that
person's circle.
Also, here's a key thing guys,you don't need to apologize for
your kid.
You don't need to do that.
You can say thank you forunderstanding, but only
(18:31):
apologize when they didsomething wrong and be willing
to move forward.
Apologize when they didsomething wrong and be willing
to move forward.
Know that some people may notthink an apology is enough and
others are going to be justhappy that you're trying.
So you're going to get bothsides of it, but you don't need
to apologize.
You just need to say hey, Iappreciate you understanding,
we're struggling and we'reworking on this.
So thank you for being therefor us.
(18:52):
And then, if they're not therefor you, you know who to prune
and you got to move on.
Join those special needs groups.
Be prepared for those awkwardstares, but plan positive
responses.
That's the tip.
Plan a positive response.
They're staring at a feedingtube.
This is really interesting,isn't it?
(19:13):
Do you want to know more aboutit?
Some people just they're notsure.
Have you seen it before?
And then you can talk about it.
So plan something positive tosay when you see the awkward
stare, or a positive responsewhen you see or you hear the
inappropriate comment.
Find inclusive sports oradaptive sports.
(19:35):
Most cities larger metropolitancities have some sort of
inclusive or adaptive sportingsystem and some school systems
will allow kids to be helpfulConnecting with a coordinator or
maybe a therapist or providercoordinator to help you out with
(20:02):
that.
Our goal here is to educate andhelp others learn how to
include, accept and support allindividuals with disabilities,
especially our child and ourfamily.
So have grace for them and havethe grace for them that you
wish they had for your child.
That's what I was trying to say.
Thank you, guys, so much forjoining me today.
(20:24):
I hope this helps you create avillage around you that's full
of love and acceptance andaccept when it's time to prune.
Have a great day.
Speaker 1 (20:34):
This program is made possible by friends and partners
of the Special Parent Podcast.
For more information and tojoin our mailing list, visit
SpecialParentorg.
This program is made possible by friends and partners
of the Special Parent Podcast.
Speaker 2 (00:05):
I believe that empowering parents of special
needs children is like givingthem the superpower of
unconditional love andunbreakable determination.
They are not just parents, theyare true champions, shaping a
bright future for theirincredible children.
I'm Dr Deanna Iverson and I'mglad you're here, dr Deanna
Iverson, and I'm glad you'rehere.
(00:26):
Hello everyone, and welcome tothe Special Parent Podcast.
This is Dr Deanna Iverson.
Today we're talking aboutbuilding our village.
Do you or your child ever feelisolated or alone?
Because I know I have, and somany times where I'm going
(00:47):
through something and I don'teven know who to call.
I don't know who to call whowill understand.
Sometimes I know I can callsomeone who will listen, but
then they don't know what to sayand that can even make me feel
more isolated and alone.
So I want to talk to you aboutbuilding your village, creating
a community of family andfriends.
First of all, this is notalways easy.
(01:13):
It's a struggle of trial anderror.
We have friends for lots ofphases in our life and for lots
of different activities in ourlives, and we have family, and
sometimes friends and familydon't know how to support us or
that's just not their skill set.
They're not going to be thereto support you and sometimes
they're the champions and theywant to be along every road with
(01:35):
you.
But then having them thereevery single time or on top of
every single thing can almostfeel daunting or it can almost
feel like too much pressure.
So this isn't easy.
We've all struggled to findthat balance.
What is the balance betweenwhat I and my child need
socially, what we need in thesupport systems of our lives,
(01:59):
and when do we just kind of needa quiet break and it's okay to
be a little bit of isolated andquiet time to ourselves?
So we have to learn how toincorporate people into parts of
our lives and create thoseappropriate boundaries for
ourselves and help our childlearn how to create their own by
helping them to create theirown.
(02:20):
Our children enjoy so muchbeing out and about.
Our children enjoy so muchbeing out and about.
So if we can build them acommunity that can help them be
out and about and in a socialworld and able to travel and
able to go on vacations or ableto go to amusement parks or the
park, if we can build acommunity around us that can
(02:40):
help us do that, then we createthat happy, joyful parts of life
.
We create those for ourchildren and that's really
important for their development.
So let's admit it to ourselvesit's not easy to go places.
You watch any mom with any childand there's always stuff
Someone's toting around withthem.
So then you take a mom with aspecial needs child.
(03:02):
That tote bag gets a littleheavy.
It sometimes can be like a bagof bricks.
There's the stuff you need,then there's the sensory stuff
you need, then there's thebehaviors.
We all know that we don't leavethe house without pre-thinking
out okay, if A happens, thenwhat am I going to do.
If B happens, then what am Igoing to do?
Maybe we have adaptiveequipment that we need so that
(03:26):
we can be successful or can havea good time, and that adaptive
equipment of course needs stuffto go with it, and we need
someone to help us heave, ho itin and out of the cars and those
kinds of things.
We might need some extraclothes.
That stage ends for a lot ofparents.
But, maybe those of us withspecial needs kids, that stage
(03:51):
doesn't really end.
We might need different typesof food or specific types of
food, because even though we'regoing to be going out to a
family's house for dinner, weknow that our child's just
either not going to be able toeat something or we know that
they are going to have areaction to some sort of food,
so we have to take specialtyitems with us.
So can we ever really relax?
(04:11):
I want to say yes, yes, you can.
Whenever you leave the house,we're all on display.
Let's admit it.
Every parent out there leavesthe house and is somewhat on
display Because as we navigatethis world around us the grocery
store, for example and do thesekinds of things other parents,
other people they see us.
(04:33):
They may not be intending towatch or to judge, but it's
there.
We can expect a range ofreactions from that awkwardness,
the awkward staring.
We can expect insensitivecomments though I'll tell you
they probably didn't mean itthat way and hopefully we can
plan for some encouragement, Iwould say, as special needs
(04:56):
parents, as we navigate thisworld around us, if we see any
other parent special needs ornot, any other parent out there,
and we notice that they'restruggling, we can give them a
wink, a smile.
We can walk by and say you gotthis.
We can walk by and be like, ohso there with your mama, keep it
up, keep it up.
We can be there for otherpeople.
(05:17):
We can offer that encouragementand as we start to do that,
other people that surround usare going to hear it and they're
going to want to offer it toothers too.
A community can help.
So once my son was having ameltdown in a store.
Shocker right, my child withautism and a behavioral disorder
(05:38):
having a meltdown in a store,oh yeah.
And it was one of thosesituations where, when that was
taking place, the employeestarted walking by and he
literally stopped, smiled andsaid, hey, you guys are so
amazing, you got this, you'rewelcome here anytime.
And then he kept going, whichat first just threw me off my
(06:02):
guard completely.
I was like, oh my gosh.
But then I wanted to, like Iliterally want, before I left
the store, I just wanted to hugthe guy.
I didn't, don't worry, I didn'ttackle and hug.
I didn't tackle and hug, but Idid mention it on my way out the
store to the manager when I waschecking out, I said, hey, I
want you to know so-and-so.
(06:27):
This is kind of what he lookedlike.
Can you please just go tell himthank you, he is an awesome
employee.
So I wanted to share thatlittle nugget of how much that
encouragement meant to me andthat's why I've decided I'm
going to try to encourage othersas I navigate this world around
me with my child.
So sometimes I just want toblend in.
I'm sure some of you have feltthat way before too, where you
(06:48):
just would like to be able to goto the store and have no one
notice that you're walkingaround the store or, you know,
have the kid who's sitting thereeating the carrot in the
grocery cart and everyone's like, oh, what a cutie pie.
And you're like, yeah, I canfeed him anything and he just
sits there and eats his carrotand is a happy lark, versus the
kid who you try to feed him hisfavorite snack and he flings
(07:08):
applesauce across the aisle.
So I guess I'm speaking fromexperience, because these are
real world examples that I'vehad and I would just love to
blend in.
Sometimes it would be easierjust to be neurotypical, but
we're not.
So one of the things I learnedto do was I embraced standing
(07:29):
out.
I embraced the fact that we'renot going to fit the norm and
we're going to have situationsthat could be embarrassing if I
allowed myself to be embarrassedand that's what took place for
me.
So what that means is that Ican relax.
I can relax because I'veaccepted that it's not going to
(07:52):
be easy, just normal as I walkaround.
I've accepted that I'm notgoing to blend in every time.
So instead of preparing andbracing for it in a negative way
, I more try to remind myselfhow important it is to laugh.
We all have times in our lifewhere we just have mistakes that
(08:15):
take place and we have twooptions of how we're going to
respond to that.
And whenever I'm trying tosurround myself with a community
, I make sure that I'm part ofthat community for other people
and therefore I welcome theminto mine who can just find
laughter sometimes in thestruggles of life.
(08:36):
So there is a mom, a mom's storyI wanted to share with you
another special needs mom andshe had a family member who
judged the actions of her childand her as a mom.
She had a family member whojudged not only the actions of
the child but then her as a momand how she responded to it.
And so what happened was shehad gone to a family event and
(09:00):
she had told this.
A family member like hey, this,this is how we need to act,
this is the way that we need tobehave, um, with my child.
This family member didn'tlisten to her suggestions and
it's like oh, that just makes usall want to.
Oh, the family member did notlisten to her suggestions and
(09:21):
it's like, oh, that just makesus all want to.
Oh, the family member did notlisten to her suggestions on how
to handle her child, and sothings didn't go right and the
child had the meltdown and theydecided it was best to leave.
Upon them doing that, thefamily member called and was
very judgmental on how thingsdidn't go well and the way the
(09:42):
mom should have done thingsdifferently to ensure that they
did go well.
So I thought about that story.
I thought about the times thatI've been in similar like
situations and I think we've allkind of been there.
But I'll promise you right nowwe're going to get through it.
The way we get through it is wesurround ourselves with the
people that really do support usas we trial and error this and
(10:03):
the errors hurt, but there arewins.
We're going to find people thatcan be really great listeners
and know what to say at the end.
We can find people that can bereally great listeners and
sometimes know how to challengeus at the end.
Sometimes we need the challenge, even when we don't like it.
We can find people that justare like, hey, let's just go out
(10:24):
for a little while.
Someone who will maybe inviteus over to their house or be
willing to go to the park withus and be okay with the awkward
moments around us and be the funfriend.
We can find someone who issomeone who's willing to help us
.
I remember when my son waschecked into Phoenix Children's,
I had a friend who would bringme Starbucks every day.
(10:45):
Yeah, it was close to her work,but it wasn't like it was on
the way she had to park, ridethe elevator to the floor, give
me the Starbucks, stay with mefor 30 minutes and talk and then
she's like all right, if you'restill here tomorrow, I'll see
you then.
And it was that idea of just.
She knew that I was goingthrough stuff and she knew she
(11:06):
couldn't fix it, but she knew Iloved my Starbucks in the
morning and I wasn't going toget it while my son was in the
hospital.
So there she was for me.
So start surrounding yourselfwith people like that and then
you can start helping your childfind similar people.
As your child interacts withsome people, it's really good to
say this is a good friend thatyou have fun with.
(11:28):
Did you notice how you had funhere?
Did you notice how, when yougot upset, this friend helped
you in this way?
So that helps your child.
Start to learn and see how theinteractions of other people can
impact them and how they canwork with others.
You can also even say thingslike hey, did you notice how,
when we were doing this activitywith so-and-so, they didn't
(11:52):
respond well?
And maybe your child's like no,I didn't say that Well, I did,
and so we're probably not goingto hang out with that person as
much.
Or I'm going to have a talkwith their parent and see if
it's even appropriate if we hangout again.
So help your child learn thatit's okay to we're not going to
get along with everybody andit's okay to have those
boundaries, because we as adultsknow we've had to do that many
(12:14):
a times in our lives.
One of the things I got fromone of the books that I've read
is you know, we may be paddlingup the same river, but not in
the same boat or paddling withthe same equipment.
Most people have a lot of advicebecause there's a lot of
parents out there and they'retrying to help, but not always
is advice very helpful.
(12:35):
So when people give me advice,sometimes it doesn't come across
as advice, it comes across ascriticism, but I'm just going to
choose to put it in the light.
When people give me advice, ithelps to find peace that I
believe that their advice isgood quality advice from some
sort of experience.
It just may not be good for mykid, but since it is good
(12:58):
quality advice from their somesort of experience or their
research or their thoughts, orthey read on some book about
ADHD or autism or behavioralproblems, what you can say is
thank you, I really appreciatethat.
I'll think about it.
You may know it's not going towork for your child.
(13:18):
In fact, you may have alreadytried it.
If you're like most specialneeds parents, you're trying
everything out there.
You may have already tried it,but sometimes it's just easier
to say thank you, I appreciatethat and move on from it.
When you're the parent, youdecide what advice is best to
follow and what is not.
But those friends, those peoplethat surround you in community
(13:42):
and really are trying to givehelpful advice, let's thank them
for it and move on from there.
So I had a doctor give me someadvice one time.
That wasn't helpful.
So I'll give you an example.
He was a GI doctor and my sonwas refusing to eat.
He was on a feeding tube andnot eating, and we were trying
(14:05):
to figure out lots of things,lots of details to this story.
However, we took him just for asecond opinion because we
weren't seeing much success.
I talk in a previous podcastabout therapies and therapists.
We weren't having a lot ofsuccess with the feeding therapy
.
He wasn't making a lot ofprogress during this window of
time and I wasn't as patient asI maybe should have been.
(14:28):
I thought, well, let's asksomeone else, let's see what's
going on.
And this doctor said you know,if you just stop tube feeding
him, he's going to get hungryand he's going to eat.
He's old enough.
So we were like, well, let'stry it, let's just go home and
try it.
So we went home and it was twoand a half days, two and a half
days, of not feeding him throughhis tube, two and a half days
(14:54):
of him not eating and whewprobably heard that in my voice.
As a mom, that was hard.
I started to notice a change inthe way he looked.
I mean, he was a young child,so he wouldn't do anything, he
wouldn't eat, he wouldn't drink,and my husband and I were like,
oh my gosh, our son is hurting,we're hurting him.
So we immediately startedfeeding again, we immediately
(15:17):
started doing everything anddidn't call, didn't go back to
that doctor again.
But we're like, well, we triedit.
Boy, was it not successful.
Boy, was it not great.
It was some bad advice, butsometimes you're going to get
that bad advice from reallygood-hearted, well-intentioned
and really intelligent people.
(15:38):
It's just not going to be rightfor your kid.
Now I'll tell you that therewas a person in our world at
that time that threatened tocall Child Protective Services
on us because of what we weretrying to do under a doctor's
advice.
And that's when we learned theimportance of not sharing
everything you're doing witheverybody in your circle,
(15:59):
because we may be paddling onthe same river, but we may not
be on the same branch of thatriver.
We may not be in the same boat,we're not as far along, we're
definitely not using the samepaddles.
So this river of life, as youstart to pick and choose who's
in your circle, it's going tohurt real bad sometimes when
people have to be pruned out ofit.
(16:20):
But it's an important thing tolearn is that who we need to
share things with and who wedon't.
So I'll wrap it up with sometips and tricks.
I'm sorry I've done a lot ofheartfelt talking on this one.
Get involved in therapies tohelp you meet other parents.
Other parents are going to besome of your best connections,
(16:43):
some of my closest friends thatI can talk to just about
anything with when it comes tomedical therapies and my son are
other special needs moms.
We may not share every aspectof our lives together, but I
know if I call them and I wereto tell them about what I did
with the feeding tube, I'd getbig hugs and, oh my gosh, girl,
I know how you feel.
I've done something similar.
(17:04):
So if you get involved intherapies, if you start reaching
out to special needs groups, ifyou get on social media with
special needs groups I don'tsuggest sharing your life on
social media, but get on thereto make connections.
That's so healthy for you.
Be out and about even when it'sexhausting.
Do it when you have the energy.
Do that self-care that I talkedabout in my other podcast to
(17:27):
build up that energy.
Have productive conversationswith people and help them learn
how to be supportive.
We're not going to get throughto everybody, but sometimes,
like when we were in arestaurant the other night, my
husband and I were just enjoyingdinner and the waiter comes by
and starts talking and he says,oh yeah, my son has autism.
And we were like, oh, and welit up and all of a sudden the
(17:47):
waiter's our new best friend.
So it went from we were out andabout to having a productive
conversation where we made aconnection with someone.
I've had conversations beforewhere I've said to someone, hey,
that's just not going to workfor my son and I can explain to
you why and I've had tworesponses.
I've had the oh, I hear you,all right, thanks for explaining
(18:10):
it.
And I've had the other responseof well, but, and it's like,
okay, so we're not going to getthrough to everyone, but when we
do, we've made an impact thatwill impact everybody in that
person's circle.
Also, here's a key thing guys,you don't need to apologize for
your kid.
You don't need to do that.
You can say thank you forunderstanding, but only
(18:31):
apologize when they didsomething wrong and be willing
to move forward.
Apologize when they didsomething wrong and be willing
to move forward.
Know that some people may notthink an apology is enough and
others are going to be justhappy that you're trying.
So you're going to get bothsides of it, but you don't need
to apologize.
You just need to say hey, Iappreciate you understanding,
we're struggling and we'reworking on this.
So thank you for being therefor us.
(18:52):
And then, if they're not therefor you, you know who to prune
and you got to move on.
Join those special needs groups.
Be prepared for those awkwardstares, but plan positive
responses.
That's the tip.
Plan a positive response.
They're staring at a feedingtube.
This is really interesting,isn't it?
(19:13):
Do you want to know more aboutit?
Some people just they're notsure.
Have you seen it before?
And then you can talk about it.
So plan something positive tosay when you see the awkward
stare, or a positive responsewhen you see or you hear the
inappropriate comment.
Find inclusive sports oradaptive sports.
(19:35):
Most cities larger metropolitancities have some sort of
inclusive or adaptive sportingsystem and some school systems
will allow kids to be helpfulConnecting with a coordinator or
maybe a therapist or providercoordinator to help you out with
(20:02):
that.
Our goal here is to educate andhelp others learn how to
include, accept and support allindividuals with disabilities,
especially our child and ourfamily.
So have grace for them and havethe grace for them that you
wish they had for your child.
That's what I was trying to say.
Thank you, guys, so much forjoining me today.
(20:24):
I hope this helps you create avillage around you that's full
of love and acceptance andaccept when it's time to prune.
Have a great day.
Speaker 1 (20:34):
This program is made possible by friends and partners
of the Special Parent Podcast.
For more information and tojoin our mailing list, visit
SpecialParentorg.
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