This rough edit transcript, which may contain missing, misspelled or paraphrased words, is only provided for your immediate review and is not certified as verbatim and is not to be cited in any way.


61621.  HKNC.  1 p.m.
National Center on Deafblindness 
Alejandra Cuevas, Carlos Martinez, Herlinda Rodriguez, Kenia Sanchez, Mayra Garcia, Sonia Hernandez, Martha de la Torre, Myrna Medina.  
.
>> Wow, we're top of the hour.  Hi.  Good morning.  First of all, I just want to say that in order to listen to this presentation in English, you have to push the interpretation button, you hit the Google and switch to English.  So if you could all do that and then I will start the presentation in Spanish.  
>> Welcome to our presentation today.  
I would like to start with an important phrase that I found.  I don't know where, but I found it.  And it says, be culturally sensitive is more than just speaking the language.  Based on that, we're going to, we're going to use that to lead this presentation today.  So I'm going to say good morning, my name is Myrna Medina.  I'm the family specialist.  Deafblind project in California.  This presentation is called changing your perspective.  Lessons learned and knowledge from the Spanish speaking families.  
This presentation is going to be recorded and saved on the website on the National Center for deafblindness.  
We've kept some time after the presentation to answer questions but if during the presentation you all have any kind of questions, please put your questions in the chat.  
We'll be reviewing those during the Q&A session at the end of the presentation.  
So I'm going to proceed to the next slide.  The families today, the panelists are going to share with you all their personal life experience being parents of special children.  They're going to talk about when their child received the diagnosis, their experiences with access services, where they found the majority of their help and important information that they want other families and providers to know.  
All of this comes from barriers that we have found faced during the course of the, of this process.  It hasn't been easy as it relates to cultural and the linguistic aspect.  
So, the results that we want, after you all hear from these wonderful fabulous families, their stories, one thing that I would like to clarify is that when we started to organize this presentation, I started, you know, calling people, finding people that are in our group.  And all of them immediately said, yes, yes, yes.  So for me, you know, everybody said yes.  I knew it was very complicated about yes, no, yes, no, because all of our families have a story to tell and these stories are all important an they're all valuable.  And I wish that everybody could hear all of these stories, because every person, every family starts from a different, has a different starting point.  We don't all start from the same point.  Each person has their, you know, starting point.  
So, it was very difficult for me to, you know, take people off or not include people in this group of panelists.  I want you all to really open your ears, your eyes, your heart and really understand and listen to these parents and panelists an reflect on their stories.  
The results that we want to show from this presentation from each state, every state project, to review their count, the amount of children to determine the cultural, the cultures and languages that are present in your state, in your different states; exam minute the internal capacities to serve the families of diverse linguistic and cultural origin.  Look for statewide associations that support your search references.  And support for the family.  And that they have a greater appreciation and value for these families.  
So, having said that, we're going to start by presenting the panelist, Alejandra.  Alejandra, I'm going to, let me introduce myself.  I'm going to formulate some questions.  As far as for time purposes, I'm going to say that we are a group of several families with different stories.  And we all want to hear them all.  
So, we're just going to answer a few questions at the beginning and then afterwards, each person can expand on their story and then we're going to learn more about each one of you.  
So the questions would be your name, your child's name, diagnosis, if your support system is what inclined us to do this and how long we have been providing this service, this support services and then something, a characteristic of your child.  
So, excuse me, Alejandra, let me say it again.  My name is Myrna Medina.  I'm from California.  I live in Riverside California.  My son, Norman, was born DeafBlind due to a diagnosis that was unknown.  We don't know exactly what it was or what caused it.  So I started to support different families from that moment, or a little bit before I started working for this project in 2000.  
One characteristic about Norman, is that he was very social person.  He has the best beautiful smile and in fact everyone that he meets.  
So now I'm passing it on to Alejandra that wants to introduce her family with these beautiful families thank you so much.  
>> Thank you so much.  My name is Alejandra.  And my husband and two daughters, Natalia is ten, Alana is 8.  Both have a diagnosis of Usher's type 2.  
And I'm just now getting involved a little bit more in this.  The characteristic about them, both of them are super intelligent.  They're happy.  And that's the most important thing.  And they're very, you know, understood.  So thank you so much.  
>> Thank you so much Alejandra for introducing yourself.  We're going to continue on to Megan.  To the next slide.  
>> All right.  Carlos, good morning everyone.  Myrna, thank you for the opportunity.  To be able to participate on this panel with you all again.  My name is Carlos Martinez.  My son is Carlos Martinez, he is 27.  He's bilateral blastoma.  In the picture, you can see, it's a picture we took from graduation, when he graduated from college in Irvine. 
That was right after the ceremony.  You can see his mom, Carlos's aunt, Priscilla, the one in the front that's taken the selfie, Carlos's sister, Jocelyn and Letitia is on the side as well.  And they're sisters.  
What else did you ask for in the introduction?  
>> Support parent, what drove you to do this and how long have you been doing this?  
>> Thank you.  I started on this journey because of Carlos's disability.  So I started, he was in preschool when he was diagnosed with a disability.  And we had already finished that first process with the whole doctor and we were going to start everything that went with that, with the school and everything else.  
From that point, I think it's pretty much exactly what you just said, Myrna.  I started being a support parent since before I started working in this, because before I did it, there was other parents that were there to support me.  So after that, you know, I've been working at a Sam's school 22 years from where my son graduated.  The children center in loss an gentlemen last and I've been there 22 years, giving support to different parents.  Thank you.  
>> Thank you so much Carlos.  
Now we'll get to know Herlinda.  
>> Hello.  Good morning.  Good morning everyone.  Thank you for the opportunity for being here with you all.  All of these beautiful people.  
I would say that every group and every different place is all part of the family.  We're like, we're like siblings in different places, so I really identify with them.  My name is Herlinda Rodriguez.  You can see Michael in the picture.  Michael is 31 now.  You see my husband behind him.  My son, the youngest.  
You know, and really made it realize that having a children with special needs is not sad like you would think initially because he was born after Michael.  So, that really kind of brought a life on my life.  So the other two older siblings that he has, well I have four boys, four men.  He's the last, Mike is the third.  And Mike has cerebral palsy.  
He has a lot of medical problems.  Depends on a tube right now.  It's progressively worse.  Epilepsy not under control.  And there are different types of epileptic episodes that we can't control.  And so, a lot of people are saying we can't do anything else for him.  It's been very challenging the things we've gone through.  But we're always a happy family because every eight days we get together.  
You know, my hair and my tamales, we do everything, just amongst family together.  Trying to live a united life, a life together. 
And you know, the world will say that we have a child with special needs, but we always try to find the most beautiful moment every weekend.  And encouraged me, motivated me to be a support system with Michael.  It's his fault, he's the reason for everything.  You know, when he was born, it was so hard and I didn't, I menial of the disability, I kind of took it on myself, because it was one diagnosis after the other.  And it could have, it could have taken me to, into a deep depression because I felt moments that I just wanted to throw myself, and what is this, what is this, what is that, what is that?  And.
And so it's really when I started to know the support groups back in the 90s.  It wasn't as common as it is now.  It was just like language in and of itself was a big barrier, but we got together either way.  And all of us spoke Spanish.  And we're a family specially.  
Now for awhile there are people in the same situation, there are people like me that are trying to thrive and prosper in life.  So little by little, I got to know people and the system and all of it, different diagnoses and blindness and so many ear infections.  
And then the result was deafness more so on the left side.  And then feed, then talk, then walk.  It was very challenging because continuing that for us, the biggest challenge was the language.  Michael told me that I had to speak, speak Spanish, because for me, driving was one of the, I think for me, because all of the meetings were so, so far away.  So it was him that really motivated me to do all of this and be involved in this.  
So it's a beautiful thing.  There is so much I can say.  Did I leave anything out Myrna? 
>> No, I think we're all good.  So now we're going to learn about Kenia and later you'll have another opportunity to talk more in depth.  Kenia.  
>> Good morning, my name is Kenia Sanchez.  I'm Mexican.  Excuse me.  Can someone mute their audio please.  Because there is a lot of noise.  
Oh, it's in mine.  Okay, I got you.  I'm going to try to figure this out.  
Hold on, on my phone, one second.  
Okay.  Good morning, my name is Kenia Sanchez.  I'm Mexican.  I live in the City of California.  We've been here for about four and a half years.  You can see my husband and my daughter in the picture, Kenia is 15 years old.  
She has charge syndrome.  And we came here to look for resources and alternatives to be able to help her.  
In my school there were other parents, when I got here, I didn't know anything about the system.  The resources or anything.  And so I was a mom that kind of, you know, extended her hand that kind of familiarize myself with the system and how I could help my daughter.  
Right now, now I help families that have recently arrived so that they know how the system works.  And they don't have the same battles and struggles that I've had when it comes to their children.  Because it's a lot.  And so, to come, you know, no one is going to come tell you the resources for your children, you have to look for them yourself.  So thank you so much for inviting me.  
>> It's a pleasure.  
>> Hello, this is Mayra Garcia.  My child was diagnosed legally with deaf and (indiscernible).  There is a rare (Cutting out).  There is only one in five million children have that.  It affects all five senses.  And only given seven days to live, but God thankfully has given us many years.  And I've been able to come forward and have a support group for a few years now.  And they've helped me with being ar parent.  Because I had a language barrier difficulty.  
I didn't know how to handle things at first.  I didn't know how they would be.  And it's a difficult system, difficult to learn about.  And you have top, you have to learn to be everything; a parent, a therapist, teacher, and use anything that's possible to help your child.  
So that's why I try to help other parents now, because I don't want them to struggle the way I did.  I don't want them to waste their time.  I want them to do the best.  
The characteristics of my child.  I know that it's important never to give up.  He started, he was up for operation, he was able to walk and then run.  I'm a single mother.  But I have my daughter Hernanda, she's been involved a lot with her brother.  She's a (indiscernible) therapist.  And next to her is her boyfriend who helps us a lot with my son.  And then we know him as the good looking one.  That's why we call, that's everything.  Thank you.  Thank you for inviting.  Thank you.  
>> Thank you Mayra.  
Now we have Sonia and her family.  
>> Hello.  Thanks for inviting me, and having us.  Thank you Myrna.  We wouldn't have met her so many years ago when my child was very little.  My name is Sonia Hernandez.  I have three daughters, 11, 8 and one that just turned 2.  Lydia is the one with special needs.  She has cerebral paralysis.  And I have a second daughter, Vivian, the 8 yearold.  She's got AD D.  ADHD, hyperactivity.  And then the two yearold is the littlest one.  
I have been involved especially with my daughter in the past few years.  I got involved with the group and started to open my eyes.  For a long time, (indiscernible) I started to get more involved.  I got support from this group that was where (indiscernible).  
As I got involved more and more.  And from that support group.  And so, the little that I know, because when I say little, I just know I need a little more, but I know when I found, when I realized that (indiscernible) doesn't have that kind of support or hasn't been able to learn what I learn.  I like to share what I can.  I feel that's what it's about.  Helping each other out.  
So, thanks a lot again for inviting me to be here with you.  Thank you.
>> Martha, if you would like to introduce yourself, I'm sorry we don't have the picture of Martha, with her son, but we've got Martha.  She is a pine near with these occasion, because she started and has been helping parents for a long time.  Go ahead Martha.  
>> Good morning to everyone.  Welcome.  To those that speak English and you get to hear from Latin families how we're going over everything.  
I am mother of four.  The oldest is he is de la Torre.  And he has various disabilities, including his sight and he has cerebral (indiscernible) as well so I'm a mother that has been working a lot on the way of my husband.  And (indiscernible).  And nine months of depends a lot on me.  We are very unified, we're very close.  We are always learning.  We never stop learning.  
So we're going to try to support other families, other parents like they support me.  So basically, it's, that's it.  Just helping my son out.  And my other children are my priority.  So, thank you again for this presentation.  
>> So, the panelists, we see a little bigger, what I would like to ask you all is, how was the first time that when you found out about the diagnosis of your son or daughter, what were, what was, what was the thing you struggled with the most?  I can imagine, because I'm a mother, and when I had that diagnosis for my self.  But I wanted to know what it was like that first time for you.  
Does anyone like?  I know that Alejandra.  You were in Mexico or were you here in the United States when they were diagnosed?  
>> I was in Mexico.  That's and at that time they, they weren't doing this.  Mexico didn't have this.  They had the situation in Mexico, but in that situation, we were in a private clinic.  They weren't diagnosed for some time.  So I think they're trying to do that.  
So when we came to the United States to live, she had received experienced help.  And then once we got here, they do all the checkups, the hearing test.  So that's when we got the diagnosis.  And they said that there was a hearing loss; or not just a hearing loss.  
And she had a sister who was just a baby.  And then they did the same study.  And they were the same hearing loss, but, (indiscernible).  
Talk to another mother who had a child with these hearing problems, they asked if we had ever had any genetic testing done.  We hadn't.  No one had suggested it.  So she said, well, normally, whenever there is a problem, like a hearing or something like that, we recommend it.  
And I didn't like to hear those kind of comments, but you know, deep inside, I knew as a mother that you have an instinct.  So we did the genetic testing.  And Talia, all this there was nothing.  
Then I asked them, did you check all the genes?  They said no.  So, then they, there should be more testing for other genes.  Then they called us one day and they said, yeah, what we found.  We found what's going on with your daughters.  Because we're going to check other genes that we hadn't checked on the oldest.  
That's when we found out Usher's syndrome and that's how we knew.  
>> I may continue.  Once you had the diagnosis for the girls, what did go through your mind?  I know that you've been struggling to get services and things.  And thingsÊyou hoped you would find more easily here in the United States.  Can you tell us a little bit about that?  
>> When it was just a hearing loss, I thought well, no big deal, we'll get the hearing aids.  It will just be like a normal situation; where we'll just get used to it.  But we found out about Usher syndromes, it was devastating.  I really felt like on that day you're getting everything in English.  We don't speak English well.  But even like that, I felt like it was, like this is a nightmare.  
You know, maybe I'm not understanding them.  But my first thought was, I don't have a family.  I don't know of any other family members which is inflicting.  So we had to have a follow up with a geneticist.  
When we call them, I remember when we left, we were angry, my husband.  And they needed to do more testing for my husband.  And my husband didn't want to, because I would say yes, yes, we have to take this.  So we had to take the time.  But to be honest, you know, we cried.  And here obviously other parents would understand.  
But if you know my daughters, I don't know what would have been better.  You know, knowing that over time that they're going, their condition is going to get worse.  ÊI don't know if it's better to know that or not.  And knowing it's just not a hearing problem, it's very difficult, very difficult.  
And I'm here to learn and to be able to prepare myself to be able to give them the best.  And once they grow more, at least, you know, be able to show them that they were able to get something betterment even though it's going to be very hard, I feel like the God gave this to us and it's the path we're on.  Thank you so much.  
>> Thank you so much.  Anybody, anybody else would like to tell us about their experience?  Anybody else?  Mayra.  
>> Really, in many situations, the specialists aren't prepared to give you these diagnoses.  And almost all the diagnoses, I had to learn about myself.  When I was pregnant I did the test.  And I got a positive.  And this type of problem with the child.  They gave me a second test and they said everything was fine.  
I don't know, you feel like there is something that's not right.  Their crazy with (indiscernible).  And the morning they're born it's born with water, a little off.  And they take him to the bathroom and took him away from me.  Because during that time I started to say it wasn't growing.  
Then nine months went by, he wasn't moving.  And they told me that, that I have (indiscernible).  And I talked to the (indiscernible).  I don't want an abortion.  It's not moving.  And I started talking to my doctor.  And finally, I had an MRI.  And they realized he had this syndrome.  That affects all parts (indiscernible).  
Once they realized he wasn't moving, wasn't responding to the various stimulus.  So we did another test.  A vision test.  And then we realized he had a serious loss on the right side and also on the left.  We could tell he wasn't seeing well.  
And the doctors came up to me, because it was really frustrating because they didn't give me information.  And when they told me that I had postpartum, it's a very good (indiscernible) syndrome though.  It is very improbable.  
So, they said it was going to be seven days of life.  And I had dyslexia and I was improperly diagnosed by a doctor.  And since then, and I always thought when I have my children, I'm going to really be concerned about what every little thing.  So I started to just look into this.  And look at my daughter.  But it's really difficult to find a Specialist that are really prepared.  
And after nine months, I had (indiscernible) problems.  (indiscernible).  Told me how to get in touch.  And I heard a doctor (indiscernible) at that time, things started, computers were common.  And I got this computer.  And then it was more devastating because of the information I got from the disease.  That everybody is going to die from it.  
It was very difficult for me to receive this diagnosis.  And it was even more difficult for my husband.  We got divorced because he never could accept the diagnosis.  He never could accept the disability.  It's very difficult to get services and to understand the diagnosis.  
It's like what Alejandra said, I can say that for other parents, it was very difficult.  
>> Okay.  We have time for one more person.  Did anyone want to elaborate on that first question?  Okay.  Herlinda.
>> Honestly, all of us have gone through those different situations and I agree with Mayra and Alejandra.  We always say it's so sad this happens.  But for the, you know, either way, we needed to have these meetings and figure out how we can come to different conclusions and resolve different things.  
For me, when Michael was born, this should go with low, but we were kind of, what are these, is it like some kind of episode?  We don't know the word to describe what's happening.  How are we going to give a name to something that we have no specialty in.  
So I called the doctor.  And the doctor said, oh, sometimes kids skip around like that.  So sometimes they'll shake or tremor.  Like bathe them, change them.  Those first three months, he was crying from noon it will 7 or 8 at night.  But I mean it was a different kind of cry.  It was an intense cry.  Pain filled.  A strong pain.  
We lived in an apartment at that time.  So everyone would just hear, you know, the crying and start closing their doors and their windows.  They're like, oh, she's neglecting, she's not taking care of her child.  
I asked at the clinic but they didn't give me any kind of response.  And that was just at the beginning.  And they injected some kind of medicine to calm him down.  But he swelled up and he was purple.  It was an ugly scene.  I was like, what's going on?  What is this?  
So I think when you have this disability, you know, from the birth or in gestation, anywhere it happens, you always expect the doctor is going to support you, right?  But time goes by and you adopt hear, not a peep.  And as a mother I'm anything, especially my third son, I'm like, I've noticing these differences but I still trusted in the doctors.  You know, that's my thing.  Like I trusted and had faith in those doctors.  But time went by and Michael, there were just more and more surprises that popped up as far as diagnoses with Michael.  
One day, Michael didn't have his wheelchair because they had loaned it to me because he didn't, I didn't have one specifically for him because I didn't have a diagnosis.  So really, with the diagnosis, that really like prolonged his process.  And without help, without support.  
So, my thing is why didn't he have that wheelchair?  Is because Michael didn't have an official diagnosis at that point.  So after I continuously insisted with the doctor, I was like doctor, Michael does X, Y and Z.  He moves a lot at night.  He cries all day.  He was like, oh, no, no, just give me medicine.  No, no.  He didn't believe he had epilepsy.  Starting there.  But why didn't he have a wheelchair?  He can't go to school because the wheelchair is, was loaned to me, but the company picked it back up.  Because he doesn't have a diagnosis.  
And he was surprised.  He was like, how does he not have a diagnosis?  Well, that was the indicated person to diagnosis him.  And so hear all of that, the, who Michael is and what happened at home.  Immediately they started writing prescription.  Take this to the doctor so that they can give him the wheelchair.  And that was beautiful for me, Michael is now going to be able to go back to school.  But what is this?  What is cerebral palsy.  That was another task I had to take on.  
At that moment I wasn't in shock or anything, I was just so happy that Mike got his chair.  But afterwards I started discovering morph and more what cerebral palsy was, auditory loss, all of that.  Like they come in a little bit ago.  It was fail after fail after fail.  And it was just a bad experience.  It was horrible.  And it's worse when you don't have someone in front of you that tells you you're going to go through this, this and this, and this means this, this and this.  It was just really challenging much and that made me be here with you all and continue with you all, helping supporting families.  
So it's simply that.  Just keep reading.  Keep learning.  I don't think anyone accepts that our children, you know, have disabilities, but we continue learning throughout our journey.  And we continue motivating ourselves and we figure out what is like 80%.  I don't know if we add a percentage to it.  I think what percentage accepted it.  I would say like, oh, yes, I one hundred percent accept my child that has X, Y, Z diagnosis.  
At the end of the day you have to keep learning and working.  
>>  Yes, yes, thank you so much Herlinda.  Thank you so much Mayra, Alejandra for sharing four experiences with us.  But that led me to this next question.  How was your experience as it relates to access of services?  You had mentioned Herlinda that he didn't have a wheelchair.  Mayra, the lack of knowledge from the doctors and the diagnosis.  Alejandra was saying both.  
Was that the cause, based on a language barrier, or what other barriers were put in your journey as far as the experience and accessing services?  
If anyone wants to ex expound on that.  Sonia.  
>> I feel like first it was linguistic issue that was really a roadblock, a setback for me to learn and know about the diagnosis on my daughter.  And also to have access to services.  Because not having language access, it was, it's just it was a lot of road blocks for asking questions, going straight to the doctor to pretty much demand more information about my daughter.  
And you kind of just get closed off in your little bubble.  And you feel just, just desperate.  Just hopeless, because you can't just get out of that bubble, you know what I mean?  
And I felt like, when she was little, I felt like I missed out on a lot of learning about the services for her for the same reason, because I felt like it was a language barrier.  
>> Okay.  Okay.  Anyone else?  Okay, Mayra?  
>> For me, it wasn't an impediment at all.  I speak English.  It's not perfect.  But I really don't like to speak English when it comes to medical terminology or legal terminology.  Because it can lead to more problems.  
I know, I'm familiar with the language but not a hundred percent.  So for me it wasn't an issue as far as language access goes, but it's just the lack of information that someone has about the system.  It was more so that.  
Because I can tell you, my daughter was diagnosed late.  Like she was almost on the verge of dying because we took her to different doctors.  She had problems.  And again, sadly, those specialists weren't, they weren't prepared.  So much time.  
We would always tell the doctors in the emergency room, that she has a heart murmur.  And the doctor was like, no, she doesn't.  And they give me the same pediatrician, the same diagnosis.  They gave me the same for Jeanette and for Fernanda.  So I took her to another pediatrician.  
And when it came to Fernanda, he said your daughter is in a bad situation.  If you don't operate soon, the same thing with the eye problem, I don't know how much time she would have.  
So it's not so much a language barrier.  If you have at least the knowledge of the United States, you know, they provide interpretation with all your doctors.  You can support yourself in that right.  But if you have a problem and you don't understand the term.  There is so much medical terminology, there is so much legal terminology.  It's very hard to understand for just, your regular parent.  
You know, I've studied.  But you know, and the parent, there are parent in your group that speak different die elects or different languages that they haven't had an opportunity oh go to school.  So get to those points it's extremely difficult to get to the diagnosis point.  
So, I don't feel like it's so much the language barrier, but more a lack of understanding and knowledge as it relates to the system.  Thank you.  
>> Herlinda, you had a comment that you wanted to make?  
>> Yes.  In my case, yes, it was in part a language access issue.  And like in the 90s, there was still, hmm, like we just got here to the States.  Even though we've had education in our countries, you show up here and you have to learn, you know.  Everything is just hustle and bus he will.  You have to open up your minds and figure out which way to go.  
All right.  I have my two children.  Okay, we're going to live five, ten years.  That was 86.  He was born in 89.  So with my children, and all.  When Michael was born, I was so busy with my other children as well.  I was working.  I was just in school.  
I wasn't prepared to be a mother of a child with special needs.  I can say that.  I was going to school.  I was trying to figure out a way to start my life in this country.  Because to me it seemed difficult.  
I was like, wow, in Mexico I went to school.  I speak English.  But they would say things like the table, the chair.  But when I got here to the States, I was like, what are they saying?  This is not English that I learned.  Like we're going back to school.  
And so, certain ways I feel like I was preparing myself for that but not to be a mother of a child with special needs.  
So Michael was born, I was like, oh, wow, this is a whole another school.  And so I left my other school, my dreams and all that kind of stuff.  But Michael became my other dream.  So that's when I say, okay, English.  I got that, okay.  I got to figure this out.  But like you said, it's the system.  It's the new vocabulary we have to learn.  It's all the things that come along with this journey.  
And they don't help you, because sometimes you have road blocks and set backs in your journey.  And if you really don't get with it, you're not going, you're not going to progress.  You have to continue going at it.  Because there are families that speak different languages and die elects even now.  
So we always say, in my country, I went to school in my country and I continued here a little bit.  But it's a little bit, but a little bit is more than nothing.  So that's what led me to know that I have a child with special needs.  Continues in school.  You know, still in school.  But at the same time, with the different parents, that's the other school essentially, you know, learning in regular school, then those children graduated.  And they continue on with their parents.  So there is different classrooms in their school.  
So, that's what made me say that this, for this, you really have to dedicate yourself to it all the way.  Because honestly, it's, it's a new, it's a new world that we have to continue educating ourselves and learning about.  
And so it was a language barrier situation.  I menial of that.  It's a mix of all of that.  Of different set backs.  But you know, I didn't let them be barriers for me.  After Michael was 15 years, that's when I started to understand that.  
But before that, those first years, oh yeah, they were definitely challenging I can not deny that.  
>> Thank you so much.  Carlos?  And then we'll go on to the next question.  
>> Thank you Myrna.  
For my case, my story, I don't think it's been that different compared to what I've been hearing to this point, but there are a lot of differences as it relates to how we react.  When we get those diagnoses.  And I think for me, in my own situation, something that, um, that I consider impactful.  Wasn't only the diagnosis, but it was really important, meaning something that I really blocked myself off emotionally.  And I spent a lot of time just kind of really, just locked into the disability that my child has.  
So I had to really learn how to, I was really stuck on the diagnosis, but I had to figure out how to get out of that mind set.  But the situations that came afterwards, I never did them alone.  You get me?  Like there was always, there was always people around me that were always, you know, willing and available to provide me some kind of support.  
Whether it was emotional or moral support.  And it wasn't like, you know, the next day, one day or the next day.  No, it took some time.  You learn, you have all.  You getÊ you fall.  You get back up.  The different stages.  Like you get the diagnosis at the beginning.  And then other diagnoses come.  You know it's a lot to take on at once and we don't know what to expect.  
So, for me, it's a big difference, you know, able to find people along my journey, that some way were there to support me.  And I think, you know, and family, we find support amongst each other.  When we don't know how to navigate certain things.  But having started, everything that happened after the medical, after the medical situation, you know, you have to continue on educating yourself and then when it comes to school, et cetera.  
But I had a situation where I got a lot of support in all different aspects, emotional, legal, gave me the opportunity to validate myself as a parent, as a person, as a father, to really get to know myself, to really recognize my part as a father, and what I was doing as a father, as it relates to the things that corresponds to my children.  That you don't do it only for a child with special needs.  You do it for any child.  And anything that any parent would do.  
And so, in those different areas, it's really having recognized and value.  I worked first on the emotional part.  And then afterwards, after I could kind of, you know,  you know, open my eyes to blindness in the emotional impact that it had, I was able, I was able to thrive.  
Have I always been successful?  Has it always been easy?  No.  I've had to fall down and get back up over and over again.  I see all of that.  I couldn't do everything together at the same time to really get the biggest benefit out of it for my child, but it was also little by little, stepbystep process.  A lot of different conversations.  A lot, a lot of conversations.  A lot that weren't necessarily appropriate or pleasant, but I think one of the moms said, once you, once you experience something like, for example you know your IEP is never going to get better than what it is, or if you fail in that aspect, I think you know what to do on the next step to keep it moving.  
>> We need to really talk about a lot of the questions we had in mind.  And about the supports.  Because, you know, how are they able to find support.  Where?  And you know, talk being to other families, talking about other professionals.  
Briefly, we can focus on that, because we've gotten into that topic a little bit, but where do you find most of the support?  You know, for us, as parents and everything, on the path we're on, where?  Where could we say this, this is what helped me to be able to help my child, move ahead.  If anybody, you know, Mayra, I don't know?  
>> So, I want to recognize Martha because she'sÊ Martha and I have a big respect for her.  She came up to me.  Because I had the situation with my husband who didn't accept the diagnosis.  And wouldn't allow me to go to any meetings.  
So, I found most of the support through other parents that had a situation with children with disabilities.  
And another problem that I think is a bigger problem.  Once they give you the diagnosis, you have parents that go on for ten, eleven years and they're still in shock.  They don't know how to deal with it.  They don't know how to accept it.  It's very hard.  And it's a pain that you have daily because it's such a huge news through a change for us.  
So the biggest support I've had is through the groups.  Because your own family can be afraid.  You know, you're talking about your parents and brothers, et cetera.  They can, they don't know.  They can be afraid.  And they don't have the knowledge.  
So, and they start Tom get upset with you because the child did something.  So you start to have like a family, different family out of this group.  And you talk to them, you call them.  And you give them information so you can be able to get over the shock that you have.  
In Martha's case, she listened to me so many times, not just personal things, but things about my child.  And I didn't know how to deal with it.  So, she said, I'm going to send you to so and so and then we're going to do this meeting.  And educating us.  Because it's one of the things where I've heard of other, other countries where, in the United States they have this situation where the Hispanic families, and parents, they support each other.  And I think in other ethnic groups there is a lot of discrimination towards our community.  So that's a conflict that we have, you know to deal with here.  Thank you.  
>> Thank you so much Mayra.  
Let's go back a little bit.  Let's go back and reflect on what we've talked about.  And discussed.  What would, what were you like as parents with everything that you learned, everything that you've been through, what would you like for other parents to know or other professionals to know whether they're doctors, or in education?  Anybody want to go into that?  Herlinda and then Alejandra.  
>> I would have liked to had my time from what happened with the diagnosis of Michael, I would have liked.
I'm not sure what that is.  If it's bureaucracy or what.  Why don't they diagnosis early?  On time?  Why do they let us keep going and going without a clear, clear path ahead?  
Maybe not until five years old when he was diagnosed, when everything was there to be observed.  Everything could be observed by then.  So, that's when the, just like I've told you about, you know, we didn't have a wheelchair.  
So the way, based on the way the system works, when you've got the diagnosis, then we can start, you know, figuring out what the path was to get the therapy, to get, to talk, deal with the issues with the foundation for vision problems.  
So, those are the things, that's what helped me to be able to open up the paths to get the therapy in school.  And so if you don't have that basis for the diagnosis, and that's what we learned in our life.  And I had to learn the language of the community.  Because like I said, at the clinic I took Michael, they all spoke English.  It was very difficult for me.  Because at that time I didn't speak, I didn't have any; now I'm make be at 60, 70 percent, but at that time it was very little, just a few couple of words.  So very difficult.  
So, they, if they could take the time and if, all that time with having a bad diagnosis, I just don't know.  That's a big hospital too.  You know, where they have, it's a huge hospital where they have a lot of clinics.  So it was just very difficult.  And the language barrier.  So I would have liked, like for now that the doctors, you know, to have good interpreters in the clinics, where when you go there and they have the knowledge.  
Like I said earlier, or Martha said, I don't know, just where we're going, it just seems like we're going round and round.  
I don't want to think about the parents, the new parents that are getting, getting into this world and dealing with all this.  I know, I'm just telling you, why don't you do this, why done you do that?  Look, this is happening.  They don't understand.  I call them and they don't answer.  No, we don't have an interpreter.  If I could speak a little bit of English, they have to understand or give they a phone number for somebody.  But there is got to be good communication for us.  
So to a certain extent this still happens.  It's gotten better, but I just wish that that, they had been more sensitive to that and had gotten a timely diagnosis so that we could have been working correctly with our children earlier before they got bigger without having those services or therapies.  Thank you so much.  
>> Thank you Alejandra.  And then Martha.  Alejandra.  
>> Like Herlinda was saying, I'm on some Facebook groups with parents, and they have support groups for the children for the center.  And one of the things we talked about, when they gave me the diagnosis.  And what's next?  
Most of them that don't know about this, they just get the diagnosis.  But then later they understand what it's about.  So, that's where, I don't understand the medical part because when you go to an ENT or a pediatrician or whoever, why don't they, why don't they start there sending you to get those genetic testing from that point early on?  
Because those support groups with the parents, we all have the same questions, we all have the same doubts.  And it's just what we got through saying.  The only place you get support from is from other parents.  Where is everything else?  
Myself.  I was by myself.  I Googled.  I looked around.  And everybody was like, how did you get to this point?  Just have to look, look.  Just looking.  
So, that's not a good thing.  I just foal likeÊ feel like, that could be worked on to be better.  Because we feel like we have a lot of doubts.  A lot of uncertainty.  And if you go on the Facebook pages, you're being pressed with all of the questions people have.  And how many kids are born day after day with the same problems that we have.  
So, for me, that would be the most important thing.  Thank you so much.  
>> Thank you so much Alejandra.  Martha.  
>> Yes.  Well, the two parents that just got through speaking, they make a lot of sense.  Right now I think that things are changing a little bit from chaired to the 90s and 2000s.  Because now it's a more of a focus, there is better focus.  
Working in the NICU the few hours and they diagnosis a lot better, babies there that have these problems.  So, I think it's changing a little.  
The same thing we talked about where the doctors are not prepared to discuss the things with the parents.  It's changing a little bit because they are, they're making some improvements in that area to understand what's going on with the baby before they go home.  So if there is any disability and have some followup with that.  
And in NICU, we work with the social workers.  And since I'm a mother.  I'm not in a profession, I'm a mother.  And I work with an agency that helps families with resources.  So they give us the case and then we do some followup.  It doesn't mean we're going to get them all the tools, a box with everything included.  But we're, we give them some phone numbers and email.  And where they can talk to.  But it depends on each you know, family member, each group.  
Like what Alejandra was saying, it depends on the individual what, what I want from, what do you want for your child?  So, a lot of times it's true that they have mentioned that, and they give us that diagnosis.  We get depressed.  It can be for months or even years.  
And if we continue in that direction, we can't had hedepression, we can't help our son or daughter.  So, the best parents are working and in this kind of an agency, we have the obligation to try to put the other parents on the right path and to support groups where they can get help.  
And look, I've been through this situation and I know what to do.  And I'm still in it.  So, it comforts me, comforting to know that there are other parents that are going to help.  Because we can understand each other better between ourselves and explain the diagnosis.  And you know, in simple terms.  How that diagnosis affect my son.  How he's been able to go ahead in life.  And all of, everything that the gentleman was saying, I can't remember his name.  
We know, we know what we're talking about.  Of whether it's a child with epilepsy or, we understand it.  Even though it would have been great, because we've been on this path pretty far now.  So I think the good thing, and I've talked to Herlinda about this, is a lot of parents that are fortunate to have the (indiscernible) small children and there is a lot of support all over the place.  Support groups and agencies.  And just parents that are fighting for their rights.  
There is interpreting.  Before it was very difficult.  Now there is a law that says, if you don't speak the language, you know, they have the obligation to offer you the interpreter, the doctor or clinic.  
So, these parents now are very lucky, because they have a lot of things that are going to help them.  
>> Thank you so much.  What I tell you, this information from these parents, it's so valuable, so valuable.  Every story that we've heard to this point is incredible.  
I would like top, you know, we don't have enough time.  But we're managing pretty well.  We're going to conclude.  Each one of you will answer the following question.  
There is a document that was prepared a long time ago, in English, it was called I wish I had.  And we've translated it.  The day that we had a meeting to organize this an present it to you all and I told you all to reflect on this, because I'm going to ask you this question at the end of the presentation.  
So, you can interpret it however you want.  For example, in English, it's I wish I had.  And this is how I would translate it into Spanish and you all can continue on with the phrase.  
And I added in Spanish, I wish I had different variation of I wish I had in Spanish.  I'm going to give you the opportunity, I'm going to go in order as you appear on my screen, but I want you all to say a phrase, whichever, however you want to express and complete that phrase.  We'll start with Carlos.  
>> Gentlemen first.  You know, either way.  Thank you for giving me the honor of going first.  
What I would have liked to have happen during that time at the point of diagnosis, when we prepared this, and I gave you a phrase and I was like, I wish I, I would have liked, well right now after 22 years, 23 years since diagnosis.  And navigating this whole journey and reflecting back as you have said.  I would have liked at some point top, to have made my decision and all the decisions I've made, well I think that I went off of my heart and my feelings.  So my phrase would be, I would have liked to have been able to have made decisions, practical decisions, with my brain.  And not having thought with my heart.  However, I understand that we are all mind and heart.  Some it's all connected.  It's like connected, linked together, both of those things.  So what has to happen is going to happen.  
So, like you wonderful ladies have said, we suck it up and we keep going.  You know.  We're going to fall, but get back up.  We're going to breathe, take our pulse, we're going to keep going forward.  Thank you so much.  
>> Thank you Carlos.  
Herlinda?  
>> Wow, Carlos.  I think like all of us right now, you know, we're going to be brave, but we have to be here to support each other.  And that's my, my motto.  So sometime I would have liked to have been an expert as far as the diagnosis that I wasn't expecting of my child.  How to be able to speak English fluently to be able to navigate and go learn all of this, like how much I wanted to just, I don't know, I don't know, it's, to have a place where my child can grow up.  Because we've always lived in an apartment.  And it's been difficult, it was difficult.  
I wanted to continue my career, myself.  But now this is my new career, my other career, my other university essentially.  But I like it.  But back then, the hardest part for me was language barrier.  I mean I always had difficulty with that.  And I think what made me strong, when I wasn't able to get the services for my child, like I mentioned before, I told you about the wheelchair and that.  I'll try to tell you a little more briefly.  
When they diagnosed my son, that was very difficult for me.  Because of that diagnosis, they didn't give him, I couldn't get his wheelchair.  He was at school.  Michael was in Special Ed in kindergarten.  And so I took him in his little, physically I would carry him in his little stroller.  And they told me I can't come to the school, if he doesn't have his wheelchair.  
And so, the company here in California, Children Services, CCS, California Children Services, they are a company that helps, they're contracted with the different schools to give us, PT, physical therapy.  Any orthopedic needs.  Anything that is needed with a person that has the disabilities that Michael has like scoliosis, et cetera.  
So they loaned me the wheelchair.  I was okay, I was so happy that Michael could go back to school every day.  And then what happened?  I bought a stroller before that from a certain place.  And that stroller, for me, it was top notch, because he wasn't going to be dragging his feet on a little one for babies.  He was going to have one appropriate for his size and age.  I don't know what it's called in English.  But a stroller was like metal.  It was for growing children with special needs.  Because he didn't fit in the other ones for younger children.  
But I went, because the school did you want to, well the one that they loaned me, the tire was flaky, it wasn't working.  So I had to turn it back in for it to be fixed.  So while I was being repaired, I found out that the same person that was there helping me was the same one that took me to get that, the chair from the Memorial Hospital in long beach.  
And so, I showed up with the chair for them to repair.  And at the same time the lady said to me, wait, one second outside.  I'll lower Michael down in his chair and bring him into the room.  And they're going to fix the chair so you can take it with you.  
When the lady came out, she knew that I was there to pick up the chair.  She said the owner doesn't want to loan you the chair again, because you didn't buy Michael's stroller from us, from here.  
You know that I had to go buy from the other company.  Well she said, yeah, but you should have bought it from us here.  I'm like, what, what is going on?  I mean, I was just without a chair.  So I left.  I was sad.  I went home.  I was like, how is this system, like they wouldn't even loan me a wheelchair for Michael and he wouldn't be able to go to school for several months.  
So that's when I discovered that, yes, it's the language but it's also a lack of knowledge as it relates to the system.  Lack of confidence in myself, because I mean, we're guilty of that.  But we don't know.  We don't know.  We're not, you know, experts in this.  And we're going through this journey, you know, learning as we go.  
And so I asked the, I said doctor, they didn't give me the chair and they asked why he wasn't going to school.  I said he didn't have a wheelchair.  And he asked why.  And I said, I don't know, he didn't have a diagnosis.  I don't know.  So that's when they gave me the wheelchair.  And said, okay, in three months, I mean, it was fast, because I wasn't expecting them to process everything that fast.  But how much I would have liked to have that knowledge beforehand, or like Martha mentioned a little bit ago in the hospital, like they really, they tell parents and guide them through the process.  That's what I wish I had before.  So that's what I would like to have had back then.  
And now it's working and I'm part of this and how I'm now leading and guiding other parents.  And I hope that what happened to me never happens to them.  And their children receive the services that they deserve to receive.  Thank you so much.  I just wanted to have one link.
>> I just wanted to add one thing Herlinda.  You're not guilty of anything.  As parents we're not guilty of not speaking the language or not having this knowledge beforehand.  Adopt be so hard on yourself.  I mean, they were just life circumstances, right?  But no, you do not feel guilty for anything, please.  
Alejandra, You have the floor.  
>> Pretty much the same as everyone.  I would have liked to have the diagnosis beforehand.  So, that she would have got the hearing aids quicker, because, so it didn't have a negative effect on the school in the future.  
Another thing that we have been struggling with, obviously that happens to a lot of parents, you know, as far as it comes to getting hearing aids.  That's something that we have to pay for out of pocket.  And I know the different pages that I have on Facebook with parents that are going through exactly that; the same thing that we're going through.  
So I believe that also, like I mean we're going through that and helping parents so they can feel more self assured and also they can cover hearing aids because that's not even covered.  And it's not covered by insurance, not in California or Michigan where we lived.  So the cost of those hearing aids really depends on your income and all that.  But even still, they cover other things.  
There is like dental insurance.  There is insurance for glasses.  So maybe there could be some kind of insurance specifically for hearing apparatuses or hearing aids.  Thank you so much.  
>> Mayra, would you like to say anything.  Or what would you have like to known?  
>> I would have liked that the people that are around our children, the specialists were more prepared, more apartment.  Ê adept.  
I want to say, again, the specialists were not prepared.  The schools weren't prepared to embrace our children.  It was just a lot of struggle.  There aren't places that are prepared, public places that are prepared where your children can have access to the community, or to become an adult.  
There is so many things that I would like to have.  That I wish this world was more exclusive, that they had doctors that were specialized.  That it wasn't a doctor or lawyer that wasn't prepared.  That they have to know your child super, super well to eliminate the struggle.  Because this is not, you know, advocacy.  This is a fight.  A constant fight.  This is a fight.  And so that's what I wanted to share.  Thank you.  
>> Sonia.  What would you have like to have known?  
>> What I would have liked to have known when my daughter was younger, I have learned more than, more from those parent groups, parent support groups, because the doctors, like Mayra said, they never, I think she was two and a half, little by little, other parents, you have to ask this question.  You have to ask this one.  Why didn't they tell you this on time?  Why didn't they tell you that?  Or questions that I had to ask the doctors.  
So I would have liked to have had those support groups since she was little.  And I wish I had learned to have my list ready to go to the doctor and ask specific questions and ask more about the diagnosis.  You know, even in the IEPs, those first few IEPs were very challenging for me.  I didn't even understand the concept of an IEP, what was it for, what was the benefit.  
I thought it was to talk about my daughter and they were going to tell me the situation and that was it.  So I would have liked to have learned from other parents and have that support during that time.  And maybe I would have been able to advocate better for my daughter.  
But we're on this journey and we're learning as we go.  We are learning.  
>> Well done.  Thank you so much.  
Martha, last words?  
>> If I could be as strong as I am now.  Definitely knocked me down but I keep going forward and just being able to keep going forward.  Thank you.  
>> And yeah, I don't think I see her.  I think she had to go.  I think she had an appointment at 11:30 with her daughter.  But I didn't want to miss her.  She's very willing to, to share her information, but I just want to thank everyone.  
We're right at the time we said we were going to stop at 11:15 as far as the presentation.  So I'm going to continue with, not with the panelists, but with the, with the other PowerPoint.  The slides.  
So, this is exactly the right one.  
I think all of us are like, wow.  Our eyes are open.  It makes us think.  Now we're very inspired with everything, all this information.  It's all so valuable what you shared with us, all of the panelists.  
So the next steps that we want to recommend is that you all go onto the website cultural competence have been set up.  It's there.  NCDB website.  
You need to create an action plan for your state and how you can share that, share information, how you can share, how can we help with this community.  
And then another thing that you should get prepared for are Summit, our conference that's going to start on the 15th of July.  So that's what we would like, the next steps for the participants on this project.  
Thank you.  Thank you so much.  All the projects that everyone has been working on, so dedicatedly.  It's so marvelous to see.  
On this cultural competency effort, from Arkansas, Arizona, California, Florida, US virgin islands, the New England consortium, New York, and Texas.  They've all gotten together to give you all information.  
As I said to you, that's on that, on that website of the National Center website.  
So I just want to, before we close up, I just wanted to ask you some questions.  If anybody, I don't know, let me check, I don't know if anyone had.  Okay.  Good job Kate, thank you.  
Is, anyway, before finishing up, I would like to say thanks to everyone for participating.  To the panelists.  Also I want to say thanks again to the, everyone behind the scenes, the work, the organizing work, so this could be carried out.  
Everyone that's been attending, thank you for attending.  You'll get an email with a survey, a survey in the mail.  I would also like to finish up now saying that, that understanding cultural diverse tease is very complicated and it can scare us but it's important to understand each one of us we are human beings and we should be seen as such without worrying about where we're from, how much money we have, or what we've, how much we've studied.  
In this sense, I want to work with families, in spite of the fact that we are expert parents, because I'm a mother of a special needs child.  But we're still scared a little.  And we get intimidated and we don't know how to express everything because it's not always understood because of a language barrier, or because of cultural diversity.  Or you could say the cultural language barrier.  
So I want to, like for you to take away that there is fear on both sides.  On the professional side, on the side of the families.  So let's try to be a team and work together.  And change that culture and we'll work forward together and learn together.  
So, with that, I would like to conclude this presentation for the day.  Thank you so much.  We're a little bit early at this time, so I don't know if anybody would like, any of the participants would like to say something in Spanish or in English or either way, we can interpret.  
>> Question, answers, you've got a question.  I didn't see it.  
>> Can you read it Carlos?  Where is it?  
>> It's from Juanita.  It says, it's good to hear the experiences with regard to the process of having a son or daughter who had the DeafBlind syndrome.  In my work with families of children with DeafBlind in Puerto Rico they always ask this question.  What's going to happen when I die?  Do you have any suggestions?  And they say, thank you.  Juanita.  
>> It's good to hear from you.  Does anyone have any words for Juanita, that you can suggest?  Herlinda?  
>> Thanks for this question, but that's a tough question for all of us, very tough question.  But I think we're on this path and are here learning.  We're all learning from each other.  
And because of the reflex Myrna you made a moment ago.  We have to talk to the doctors and the professionals.  And we can be intimidated because of you know we're Imperfect and have our mistakes.  We're just human beings.  But this is a learning process.  And I think that while we learn every day with our children, it's so difficult.  
And I've told myself, you've got to be prepared.  You have to be prepared, because you're not going to be here tomorrow.  So, I've talked a little bit and I just say, look, you have to be prepared.  Because your child is going to need so many things.  Medicines, doctors.  All kinds of contacts.  You have to prepare.  Prepare that person, that backup person that's going to be there for when you're not there the most that you can.  Because we're not eternal beings and one day we'll be gone.  But we have to prepare that path to carefully bit by bit.  And somebody is helping me.  And I think all of us we're all going to be gone.  But we get nervous, we get anxious, what's going to happen if I die before my son does?  What's going to happen?  
And you get the anxiety.  And so, what we're doing is trying to be better people and support who needs, the person that needs you now.  And you know you'll feel better about it, that, it's your turn to go, you'll be relieved because you'll know we have prepared somebody and you've done the best that you could.  
>> Thank you Herlinda.  Very powerful words.  Carlos and then Mayra.  
>> Thanks Juanita for the question.  I think it's exactly like Herlinda says, it's something that takes away our sleep once we get the diagnosis.  Again, our family has so many concerns that you have.  And really over women you.  AndÊ over women you, what about the future, the future of your child, what's going to happen if you pass away?  It's like Herlinda says, you don't think you're going to die tomorrow.  But you don't know, you never know.  
So I always thought about Twill he get married?  Or will they have children?  Or will they be able to have a career?  You know, how many years will they live?  
And so, so many things, you don't have the answers to.  You just have to, just, you know, maybe the medical situation will change and change that.  But you know, he says, I'm going to drive a car and I'll be able to watch my kids get off the, watch the kids get off the school bus later.  But that was just unsettling to thinking every day about like Herlinda says.  
But I think legally we can do something that's very important, which is plan, planning the, planning their life.  And live, and leave that ready, all of that, all of that legally who is going to be responsible for what in this.  And everything should be distributed.  
And whatever all the services are, so we can do that part.  And we're going to, we're going to be able to figure that out, but legally there is things that you do to be able to guarantee that stability, emotional stability and leave, and be able to maintain that balance that you need to have in your life so you can keep going forward.  
>> Thank you so much.  
Mayra.  
>> For me, the disability is being able to think differently and process things differently.  And my sons, my son's case, I would do the things for him.  He has 16 different kiss abilities.  But he wasn't going to (indiscernible) and certain occasions like that, you know.  When a person only has one disability,  or hearing loss, (indiscernible).  You're looking at people that are involved in a world in a very different way.  It's better to get them to do it.  Go into the bathroom by themselves.  
But you, you don't have to, you have to think about, you don't want to leave that burden to another person that is not ready for it.  You have to think about how your son, your child is going to be treated.  
In the case when the person that I would, my recommendation is exposing, exposing.  Not to (indiscernible) risk, but to just in a more autonomous lifestyle.  Thank you.  
>> We have four minutes left.  Anything else anybody has any other final words?  Martha, we don't see you on the screen, but were you there?  
>> My recommendation is that just everyone be prepared the most you can.  Based on the particular disability of your child.  And then leave the legal paperwork with, that can be in port reek could with a Notary or with the court.  But do the most that you can to make the most benefit possibly.  
And even after that.  Because you never know.  So, be prepared as parents for whatever may happen within, when we're not there.  That's very important.  
Like Mayra say, it's depends on the disability of every child, of every individual.  And that is going to indicate how you're going to work in planning for their future.  Thank you so much everyone.  
>> I just wanted to thank everyone who participated.  And thank you Carlos, and that you for Herlinda, Mayra, thank you Sonia, Martha.  For sharing your experiences, sharing your experiences.  And it's a path that we're never going to stop learning, we're always going to be learning.  
With that, I want to say good bye.  And good bye to all of the participants and thank you very much and have a great afternoon.  
>> Thank you.  
>> Thank you.  
(End of session).  
		
	CART ROUGH DRAFT