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Isn't it a lovely day today, Sol? Oh, the day is gorgeous!

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Thanks for inviting me to this restaurant. Are you picking up the tab?

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Oh, no! I'm leaving that to you!

4
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Oh, Lord, but I'm always paying!

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Oh, that's not true. Besides, this is your neck of the woods. I hail from Harrisburg and I'm your guest. Okay, I'll pay today.

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Okay.  I'm so glad that we could meet again here in Gettysburg.

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Do you remember the program we taped the last time? Yes, I do. I believe the information we shared was pretty good. Yes, it was pretty good.

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It was a little formal, but that was the plan from the start.

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Well, it was mostly an important informational presentation for the residents of Adams County.

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Personally, I learned a lot about some of the hurdles and difficulties that parents face.

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Adriana, who had to step away for a moment, mentioned that-- In fact, she's the one who asked me if we could meet again.

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I think this follow-up is exactly what the emergent group here in Adams County really needs. Yes, I agree.

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Therefore, we need to continue to meet with them as it seems they'll be needing our support.

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And, I enjoy returning to this community that has embraced us so graciously. Especially, since we are working for our own community.

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And, it falls right in line with the type of work we do professionally.

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Adriana hinted at the possibility of Yeimi and Rosemary stopping by. Oh, really? Most definitely.  That's great. The whole committee will be convened.

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Yes. The whole group will meet again.

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Oh, look! Look who just showed up! Hello, hello, hello!

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How are you? Well, and you?  What a miracle!  It's so great to see you all again!

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What a beautiful day. Yes, it's gorgeous.

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We are so fortunate to have picked such a beautiful day to gather together.

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What do you think of..it's been a few weeks since the last show we taped. What did you think of the show after the taping?

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Well, it was a very informative show. Resources were made available to individuals for the various issues that they may have.

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I mean, we  have Yeimi, who has loads of information and then, there's the Hispanic Center.

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Adriana, what are your thoughts about what we discussed last time?

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Well, it's a great opportunity for families and for people, in general,

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including people with disabilities. They need help and direction regarding the services available to them.

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This helps them feel a bit more integrated into this community.

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Actually, when we spoke over the phone earlier this week, you mentioned that you were planning a meeting with some parents at Manos Unidas.

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Yes. These are families interested in learning more. Some have a little experience.  Sadly, the support groups that these families were a part of no longer exist.

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They still wish to share and learn more in conjunction with other families.

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They are looking for ways in which to learn how their children can continue to develop, including understanding their limitations. They want to help their children.

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It's interesting that you are starting to form the " Tocando Puertas " support group.

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Exactly, and, it's quite specific, too. It focuses on how to obtain services for children with disabilities.

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It's a subject matter that many families found very useful. We've had the opportunity to explore other subject matters related to specific needs within the group.

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I believe that this group is of benefit to all. People will have a place to go to.

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Traveling back to our office, Nate and I talked about the show and realized that you did not really have a chance to talk about your personal experiences.

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I mean, you sort of touched upon it, quite lightly. And, we want to know more. We really want to get to know the community better and its needs.

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I know that each one of you has a story to tell.

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But, also, the support group that you have started needs to hear you speak of your own personal struggles.

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Hearing your stories, people will loosen up...Many times, people who live with persons with disabilities get depressed because they don't have anyone to talk to.

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They don't know of anyone else who are in their same situation.

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So when they find a support group much like " Tocando Puertas ", where they can talk freely about their personal struggles at home...

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they have the opportunity to relieve some stress and even gain some knowledge.

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And, that's what we were talking about. We want people to come out and talk about their experiences, because it's important.

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Well, yes. For example, just last week I suffered a loss.

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A doctor; a friend of mine, died of a devastating heart attack.

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Honestly, I never thought I would be so greatly affected by his passing. A robust man who exercised daily. And, just like that...he passed away.

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At that moment, I would have liked to have access to this support group because it was a rough week for me.

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It would have been nice to have shared that with someone.

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Because depression often times finds you. Unexpected events come out of nowhere and you sometimes just need to get things off your chest.  Yes.

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Well, I can definitely say that I've been dealing for more than 10 years with my son's illness.

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I have talked with many people and many agencies. And, I understand that every agency has its mission.

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I also understand that people who work within the agency are the key to achieving that mission.

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I can say, about my son, that he's a child...a young man, I really should say; he's 21 years old.

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His mental capacity is that of a young child.

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Now, I do understand that everyone is overloaded with work, we all have our own issues, etc., etc.

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But, people need to take time out to evaluate the individual needs of each person

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because many times this is not taken into account.

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Well, it's due to the neverending to-do list and so on. There are always so many things that need tending to.

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All I can say is that it has not been easy.

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I've walked for miles; I've been through things that I wouldn't wish upon anyone.

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But, while we walk our path in life's journey, well, we learn through certain experiences that we have.

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My son suffers from schizophrenia/mental retardation.

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People didn't quite take to him at school.

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He had a...what can I call it...a mishap. It's been about a year now.

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And, as of this mishap, charges were pressed against my son.

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So, my son was charged when he left N.H.S. of York and he goes to jail.

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My son, who is disabled, is sitting in jail right now.

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And, he doesn't...what I mean is, the facility where he is located does not have the necessary resources or personnel to tend to his needs.

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And, he is treated differently just because he has a disability.

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In other words, they don't take into account the fact that he has a disability.

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The only important thing to them is the act he committed.

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But, can we look at the problem? Can we first look at his condition?

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Let us not just focus on the act; we cannot use the same standards for everyone across the board.

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And, now that we are talking about it, I want to show you a few of the things that he has sent me from the various places where he has lived.

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Here, this is one of them. This is a gift that he has sent me.

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Do you see what I mean? These are the arts and craft projects that he has done where he has lived before.

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I mean, look. He is 21 years old and these are the types of things that he sends me.

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Well, now... pardon my indiscretion, but I can imagine that as a mom...

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this must affect you. From what you've said before, this is an on-going, long-term struggle.

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How do you feel? How have you been able to deal with this "burden"? I believe that is how you described it earlier.

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Well, sure. I can say that God...God is always first. Because, as I said earlier, in the times we are living...

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Let's just say it's really hard. It is hard to find people who are truly interested in people; who truly are interested in listening to other people's problems...

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or, that even have the time for all that.

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I will say though, I have encountered really good people.

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Such as the people at MH/MR. There...there I found some amazing people who stood by me in some really critical and difficult moments.

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Like the time when I had to take my son to the emergency room to have a 302 done. To have him admitted.

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That, basically, is to have him admitted into a psychiatric facility. Uh-huh.

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So, we're talking about walking into a hospital to pull an all-nighter be it at Gettysburg or in York.

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That's not easy. As a mom, a lot of things rush through your mind.

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Is my son okay? Who is with him? Where are they taking him?  I can imagine you questioning yourself about whether you are doing the right thing or not?

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Is this really going to benefit him? I can imagine that second-guessing is always wreaking havoc in your mind.

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You're right. It's always on my mind. But, I can thank the Lord, as he has given me strength to deal with this up to now,

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because it is not easy. I have done as Adriana does up there in York Springs. I knock on doors and many of them don't ever open that easily.

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Or, when I have tried to contact a person, they may be too busy with meetings, etc., etc.

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I can only imagine that this support group "Tocando Puertas" (knocking on doors) will suit you quite well.

98
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Mmhmm.  Because you continue in this struggle for your son; getting him the right services and I'm sure you need a safe place to vent.

99
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Oh, yes. And, praise the Lord for my job, too. At my job, I am able to help others, who like myself...

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either have gone through or are currently going through the exact same situation.

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They knock on my door and to the best of my ability, I help them.

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That's a very difficult situation. Adriana, your situation...or, let's say, what is your battle?

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Well, my battle consists of...as I've said before, when a person has a physical disability...

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we can all see that. However, when there is a mental disability, you can't see that.

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And, unfortunately, these types of disabilities, can be considered to be more complicated.

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Finding treatment is harder, the follow-ups are harder. It is even harder to find the right person to give you the correct diagnosis and treatment,

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as well as the right facility for the treatment.

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In my case, there is a correlation between the medical and mental conditions. So, I deal with the medical portion of the condition...

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as well as with the mental portion of her condition.

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And, at the same time, when these two conditions are combined...well, you want to find the solutions for every one of them.

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Because of the physical condition...it's very difficult when not too much is known about a condition.

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So, I am always in search of a future or what might be the closest possible future.

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In my case, the life expectancy of person with a physical medical condition like the one my daughter has is only 19 years old.

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So, when I look at that girl, I say to myself, "my daughter's life-expectancy is 19."

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If I look for persons over the age of 19, I don't see much future or any better quality of life.

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And, this concept of "normal." Who defines what that is?

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In truth, there is no such thing as normal.

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It is the majority who defines "normal."  But, who is to say that what another person does differently is not normal as well.

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That might be quite normal for that person.

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Friends, parents and family members accept these behaviors as normal, and then try to support them and help them better themselves.

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You won't hear them say, "oh, that's not normal, we'll have to keep them locked up inside the house; they are an embarrassment."

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The last time we met we talked about stigmas and stereotypes. One of the things we need to do is change the definition of normal.

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Broaden the definition of the word.

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Each person is an individual and normal is whatever the typical behavior is for that person.

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When I was a student, I learned from various doctors that the word "normal" should not be used.

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They'd say that when looking at a person you refer to them as health...actually, you don't use healthy either. You say, "appears healthy."

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Because often times you don't know what they feel on the inside.

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They may appear to you as healthy, but until they have a diagnosis, you don't realize that the person does indeed have an illness.

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They would encourage us to refrain from using the word "normal", but instead use the phrase, "appears to be normal".

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And so, in great part it is that. When the family...well, it is a good thing when the family truly understands the circumstances.

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It is helpful because it helps the person with a disability feel accepted.

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But, part of the support group "Tocando Puertas" for families of persons with disabilities is...

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We can't say they are "part of the family." We can say that it is a place where people can feel comfortable,

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because there are more people who have problems similiar to yours.

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Then they will understand you better when you say that on any given "morning my child did this or that and I thought this or that."

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That person will most likely respond in kind.

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However, say these things to those who don't understand a disability...they start lecturing you about what you're not doing right!

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Yes! They'll say things like,  "Oh, you better straighten them up now or you'll have problems in the future!"

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"You're not feeding them right; probably too much or too little sugar in the diet."

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We look for...how can we say it better?  We try blaming other things when...

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in reality, there is nothing to blame.

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It's a situation where...well, it's just a world for them!

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I try to see it as an opportunity to explore a different world; to see the world that they see differently from ours.

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I can see a framed work of art, and all of us see there is a horse in it.

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A person with a disability, however, may see that the horse is a little bit fatter while the rest of us see it as average.

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The person will probably see it differently. I see the color as...maybe he sees the horse is smiling!

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And we can't!

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or, maybe, we see a painting and a person with a disability can see a reflection in one eye.

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And, we'll say, "What are you saying? How on earth did you see that?"

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And, then we notice that in ourselves there is also a small disability.

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We can't see,

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what other people can see.

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I was telling Yeimi, that this past weekend while I was reading with my older daughter

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about the life of Albert Einstein.

155
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I told her that Albert Einstein had a very high I.Q...he was a genius...he was a very intelligent person.

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But, when people talk about him, I think that many families like mine that live with a person with a disability,

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we can relate to him quite well.

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Because of displayed delays as a child; he didn't start speaking until he was almost 5 years old.

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But, he didn't speak just one word when he did start talking. He uttered an entire sentence.

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When his parents asked him why didn't you speak?", he responded, "Everything was fine so there was no need to speak."

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He was a self-proclaimed thinker.

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But, he was not a friendly person. He didn't have any friends. In fact, he was kicked out of schools because no one could stand him.

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And, it wasn't because he didn't understand. It was because he had enormous abilities; he was a very faster learner.

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Yet, he was considered to be retarded.

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He was able to see things that no one else could.

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I tell my older daughter that even geniuses have mental health issues or a disabilty of some type

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while at the same time exhibiting a superb mind.

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It is thanks to those people that we live the way we do and we possess what we possess.

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Continuing with that same line of thought, throughout history...I'm sure we are all well acquainted with the book, "Don Quixote."  Yes.

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The author Cervantes had depression. He was considered to be crazy.

171
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You are right. At that time, he was considered to be insane because he lived out his stories.

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The book he authored is a work of art within Spanish literature.

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It is a work that no one has been able to surpass.

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I believe that, as Yeimi was telling me, that when a person has a mental health disability,

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they may not be able to function in some capacity, but they shine in others.

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We must then lift up their excellant side.

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We can't just focus on the fact that they are hyperactive. We must find their strength and work to fine-tune it.

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If the child is hyperactive, let him be. But, find, explore and exploit the parts that could possibly overshadow what everyone else sees as bad.

179
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Excuse me, Adriana. What exactly is the disability that your daughter has?

180
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I was just telling Yeimi that the doctor told me she has ADHD or Attention Deficit Hyperactivity Disorder.

181
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But, today the doctor told me she has Autism, specifically...what is it called...Asperger's Syndrome?

182
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For me now, that makes things a little more complicated.

183
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I've researched ADHD and I know, more or less, what I can do to help her.

184
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Now I need to find information about how to help her with this other condition.

185
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But now, you have another diagnosis and you practically have to start over again with doing your own research,

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but one thing I can tell you is that in the last several years there has been considerable focus on autism.

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There are many more resources out there for you now.

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So, from that perspective, if we could say that there is a bright side,

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From the point of view of being able to find more information at both the federal and state levels priority is being given to this condition.

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Maybe now it will be easier for you to get the services that your daughter needs in order for her to thrive.

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Yes, but...It's a little hard to take...Yes, it's true.   As I said before,

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it's very hard when folks within your own family don't understand.

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When I go to the school...All those mental health conditions are considered to be a nuisance.

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"That child is a nuisance." "That child doesn't listen." "The child just doesn't learn what we need him to learn."

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Very restless...Yes...people who have a job to do, I let them do their job.

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But, I also have a job to do.

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I do everything possible so that she can do as much as she can for herself.

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Because, as I was telling Yeimi, I'm not going to last forever.

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And, one day she'll have to...She has to learn to live her own life...Yes, she needs to be self-sufficient.

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Of course there are services, but as mothers we need to teach them how to live in their own world.

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And, that the people who surround them respect their world.

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Would you say that one of the priorities of not just of the parents, but also the godparents, aunts and uncles, everyone that surrounds her,

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that one of their primary responsibilities should be that they educate themselves about her conditions?

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In that way you can support each other...Yes, I agree.

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Precisely. One of the goals of this group...For instance, in my case, I'm always searching for things I can do,

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places and people to find, where the services are...Sharing with other families to make their load lighter than it was for me.

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It's hard for them to accept that, too. But, that doesn't matter.

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We just need to keep in mind that when people are interested, they will do it.

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And, as a mom, if you're asked to lasso the moon, you do it.

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My hope is that people will relate to this group and readily join us.

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They should feel free to share even if they haven't been able to share with a family member or close friend.

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They might be surprised to know that it will be fairly easy to share their story with a complete stranger.

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They will not be judged.

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No one will tell you that what you are saying is wrong or that you haven't done the right thing.

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Even if we have made mistakes, we simply find a different, maybe easier way to deal with it.

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The truth is, I am so happy to hear that you are willing to lead this group.

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You not only are a great resource, you also have many of the necessary skills to advocate for you and your daughter's rights,

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and you are a great role model. Especially, for parents to educate themselves in order to help the professionals to

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find the right diagnosis for their children or, if an adult, for them too.

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Because you have an arsenal of knowledge and a great ability to be persistent at "knocking on doors"

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and I'm sure on some occasions you've knocked a few doors down, too, in order to get the message out.

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This is ideal for this support group.

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Things would be a little easier for people if they were well-informed before visiting the psychologist, the psychiatrist or the pediatrician.

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Have a list of specific questions for the doctor and not wait for the doctor to tell you "Let's wait and see what happens."  No.

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"What should I expect?" "I have this question...

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where do I need to go?" "What is the next step?"

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The doctors should see that we, too, are well-informed...

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and are not just waiting to hear what they have to say.

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Yeimi, I'm sure that in your line of work you see many families.

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Yes, just like Rosemary, I have been able to learn many specific ways regarding helping persons with disabilities.

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As Adriana said, and, I'm sure in Rosemary's experience too, what's important is taking those first steps.

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Being pro-active in getting information. If you don't know where to begin start knocking on doors.

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And, even if the person behind that door can't help you, at least, make a connection for future opportunities to share knowledge.

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This helps to break through the barriers that we Latinos face.

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With Rosemary and Adriana, they speak English, so it's fairly easy to advocate for their family's needs.

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But, for many other families, the barrier is also finding services in their own language

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be it Spanish or any other language for that matter.

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One of the things that I admire about Adriana and Rosemary is

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how capable they are in navigating the system despite their not being native to this area.

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But, that willingness to ask questions...Many times folks don't ask questions because of timidness or fear.

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That is the first step toward moving forward to help your family.

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It's truly hard to separate ourselves from their opinions because it is so innate within our culture to encapsulate ourselves within the family setting.

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Everyone gets in on it: our parents, the inlaws. I admire Latinas who can deal with that. As a mom, I find it difficult deal with everyone's opinion

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about what is "normal" and what needs to be done.

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I try to convey that message to families. Do the research and trust your instinct.

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And do the best you can. So, yes. I do my best to open the door when people come knocking.

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Do your research; find out what you need to do to qualify; be a little demanding.

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The truth is that families with the most success are those who have researched for information read on the internet and were not afraid to ask the hard questions.

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Even if all you speak is broken English, start with that.

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That will show your children, and other youths, that you are doing your best sooner or later...

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Nate?  You've been so quiet...I do have a question for Adriana.

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You've told us about the Tocando Puertas support group.  Let's say I know of a few people, because I do, actually,

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that I am sure will benefit from this program.  Where do they call?  Who should I put them in contact with?

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Well, they can contact Manos Unidas...Manos Unidas.  Okay.

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We hope to get the word out by inserting flyers in the church bulletin; we find that families respond to that approach.

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And, maybe not everyone comes to this church, but someone who does may know of someone who needs this service.

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And that way they can make the connection.

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And, this is a free program, am I right? No one will be charged?...No.

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And, I'm sure you can place the flyer in a variety of places; here in Gettysburg, Hanover and adjacent areas.

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We'll do whatever is most convenient for the families.

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I do want to stress that the people within this group will not share with others outside of the group what has been shared by you.

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Oh, yes. Confidentiality is so important.

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When people come they should feel that they can share whatever they wish: their issues, their personal experiences, the struggles they've had.

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Outside of the group, however, if we happen to see each other at the store, we simply say, "Hi, how are you?"

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Should someone ask how you know each other, the response should simply be: "I know her from such and such a place."

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We don't have to go into details, especially if you are not ready to talk about it.

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In time, you may feel comfortable enough to let others know about the group, but without going into details about the person's specific issues.

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It's hard enough for a person to be going through a difficult time without adding the pressure of someone else finding out about it.

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We need to respect where the person is in the process; their sadness, his or her pain and leave it at that.

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People should feel free to join in on the conversation and gain knowledge on the options available to them.

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This is for everyone. Like Yeimi said, it doesn't matter what is your color or your background, what language you speak, where you come from

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or how educated you may or may not be. There are many professionals who are in the same predicament.

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They may be fully aware of all the services and programs available to them and still encounter the very same hurdles.

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I'm glad you mentioned that because I wanted to ask Nate, on a personal level,

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oftentimes, in our line of work we go into institutions, specifically psychiatric hospitals,

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What does that do to you personally?

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It, in the conditions they are in, makes me sad. I am pained to see someone in an institution.

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But, it is so important to know that there is a life for them outside of that hospital.

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That, they really ought to be living with us in our own communities.

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Because I would want to be in my own home, with my own family and also, have the option of chosing a doctor within my own community.

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Adriana, I know that you need to meet your older daughter who will soon get home from school.

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It was great to see you again. Thanks for coming back to share with us.

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We'll meet up again soon! Please take care.

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Personally, if I have to visit the hospitals frequently, I leave depressed.

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I place high value on my independence.

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I know, because I've heard it from many people, that they don't want to be in hospitals.

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It is so sad to have shared with someone who has not stepped out of a hospital in 30, 40 years.

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I believe that our community can avoid this by raising awareness, demanding services, educating themselves...

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and we come full circle back to the support group Tocando Puertas.

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I feel this group can start a movement in this area.

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And, as a group...as they say, "there is strength in numbers;" as a group request and demand

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services in Spanish for those who need it.

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It's interesting. This conversation that we just had was unexpected, I feel it was similar to what will take place in one of these support group meetings.

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Sharing painful stories, sharing information. We are all professionals and we have a need to talk and share with others.

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For example, depression, mental health issues, these don't discriminate; they don't care about your race, your sex, how professional you are,

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what degrees you have, how much money you make. These can affect anybody.

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And, I'll be the first to admit that it took me a long time to publicly say, "Yes, I have depression."

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But, there comes a time when we must break with stigmas and stereotypes.

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Well, I would like to tell you something.  I would like to personally thank the two of you

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for taking time out to visit our small town of Gettysburg

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to talk about the problems that we all face together.

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You have come all the way from Harrisburg so we can start a movement, so that our voice can also be heard.

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Yes. The important thing to keep in mind is that this is just the beginning. This is just our first step

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in trying to do some work in this community.

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That sounds really good.

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That is the dream and this is why we are so interested in that this support group gets underway.

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Just know that we will always be here to support this group in any way we can...Thank you.

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So, carry on and start knocking on some doors!

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That's right.  And, every now and then, if you have to, knock some doors down.