hope

Hello family!!!

This Asian American & Pacific Islander Heritage Month, embrace every dimension of us.

I always try to think about each one of us as a human, before race, or culture, or health issues, or all the other aspects of ourselves. It is not easy many times, of course, because we have a history, our journey, everything we have learned, all we see in media, etc, and that makes us assume something about a person.

I have been an honorary lesbian, an honorary woman, an honorary black woman, an honorary straight person, an honorary trans latine, etc etc, etc

What I've meant with this, is that at many events, conversation tables, literally I've been told I am an honorary guest, that for me, it means been accepted in the family, in the group, in the chat.

It is an honor when a person or a group opens their heart or doubts, or questions to me. For many, it is difficult to start a chat, approach someone, or simply and complicated been ourselves in front of others. So, when I feel accepted, or I see smiles reflecting back to me, or a touch, a hug, a business card, or a WELCOME to this event, especially when the focus is on a particular community, the moment is magical.

I've been at many zooms, or gatherings where I am sometimes the only man, or the only Latino, or the only gay person, etc, etc...and it can be scary, it can be amazing, or complicated, because YES, it's ME/YOU, our body with all the mixing what makes me Jesus Guillen, but also, the way society works, we are REPRESENTING all our parts in front of others who are different ( and of course, this difference at the end means we are EQUAL, but also accepting what makes us unique).

All I'm trying to say is: LET's CELEBRATE THIS MONTH OUR Asian American & Pacific Islander Heritage, friends, allies, collaborators, and simply HUMANITY. As a Mexican, many might not know, that our indigenous background has also possibilities of Asian background. Even what has been known and found, it's that even our indigenous past music was more related to the notes used in Asian music than occidental melodies and sounds. Of course, that's another long conversation because most of it was destroyed, hum, the priests said it was music from the devil.

MORE THAN EVER WE NEED TO BE #Together

But, yes, at this moment, sending love, thanks, and healing energy to all my Asian American & Pacific Islander friends, allies, and in general THE COMMUNITY.

ALWAYS FIGHT FOR EACH OTHER, and for having a representation of the most possible colors of the rainbow at any event, group, and social media.

Anyone who wants to collaborate in a Zoom or an event, I am here. #Pain #Anxiety #Aging #LGBTQI #Isolation #Loneliness #Understanding ALL!

Affectionate me.

#equality #Inclusion #MentalHealth #Race #ethnicgroup #antistigma #againstageism #Hope

This is our daughter Jessica's story and the narrative for many adults who require assistance with all daily living skills and have a severe intellectual disability.

Finding the Right Fit

It's bewildering how we lose the dedicated funding and energy invested in including individuals like Jess in public schools once they reach age 21. Typically, opportunities for Jess and her peers in adulthood confine them to self-contained classrooms, with most activities being exclusionary. Finding the right fit after an inclusive public school education is difficult.  

When our daughter, Jessica, was born in 1982, we didn't know she had a diagnosis. She was our teeny first baby. Jess came home from the hospital weighing less than five pounds, yet she was born near her due date. We called her Peanut at the time. We discovered, much later, that Jess had a rare chromosome deletion and was delayed in all her milestones. Our daughter, age 41, cannot care for herself, uses a wheelchair, is non-verbal, and has a severe intellectual disability. Jessica is also the brightest, most joyful star in the room. 

Early Education

 Jessica's early education encompassed numerous schools and classrooms. Federal Early Intervention for Infants and Toddlers was not enacted until 1986. It was still 1982, and we enrolled Jessica in a local infant stimulation program for babies with developmental delays. She transitioned to a special education classroom in a center for children with special needs at age three, and at age five, she went to a school district Board of Cooperative Education (BOCES) program. The program was over 30 minutes from our home, and Jess remained in that program, which moved from district to district until she was twelve.  

Meanwhile, I worked with our local education district, Committee on Special Education (CSE), to include Jessica in our neighborhood middle school. Like the line from the old TV show, "Cheers," we wanted everyone to know her name.   At Jessica's CSE meetings, we planned intensely for her return to the district and entry into middle school. The school prepared to welcome its first student in a wheelchair.

Success

One of the first times I knew this was a success was when I took Jessica to our local food market. Some of her peers were in the store, and instead of getting the "who is that in the wheelchair" glare, we received a warm greeting. The kids approached Jess, called her by name, and said she attends my school. This gesture brought tears to my eyes.  

High school was quickly approaching, and in our and the district's opinion, Jess needed another change as she prepared for graduation and adulthood. Full inclusion in high school would not have the same benefits as in the lower grades. We believed Jess would not get the same opportunities for friendship and socialization in a secondary school math or science classroom.   

Once again, Jess returned to BOCES, but this time, the setting was in our neighborhood school. Her teacher, Leslie (Les), set up a reverse inclusion program whereby interested high school students entered Jessica's classroom and assisted. Jess joined the chorus during high school and participated in other typical activities. She still hums the music scales learned in high school chorus over 20 years ago.

Prom Date!

Jessica's next transition was to an adult day program. At her adult program, we hoped that Jess would feel useful, have friends, laugh, hum familiar tunes, and continue to maintain the goals she achieved in high school and strive to reach new heights.   Adulting in Jessica's world is far different than in public schools. The regulations are less rigorous than in public schools, the staffing requirements are inconsistent, inclusion is non-existent, and the hope for daily experiences in the community has yet to come to fruition.  

WHAT WAS ALL THAT INCLUSION FOR  

Many of Jessica's peers, who have more life skills, are in supportive employment and other inclusive community adventures. Yet, individuals who require more daily assistance often get stuck in exclusionary settings.    Jessica's original adult day program started differently. They explored the community, took field trips, and left the building. We connected with many staff and developed relationships.

A lot changed after Covid, and Jess was out of the program for nearly three years. A few months ago, I visited Jessica in her current classroom, saw the lack of interaction and activity, and knew it was time for a change.

The system is broken. New staff often enthusiastically start their positions, hoping to make a difference in somebody's life. Yet, the red tape and restrictions usually knock them down. This profession requires a significant level of responsibility, yet the wages provided are not commensurate. 

Adult programs require a culture of creativity, respect, collaboration, and encouragement. Our daughter, Jessica, loves meeting new friends, cherishes music, and enjoys outings. A way to incorporate more community activities into a daily program should exist.  

Jess has been in the same day-habilitation program since graduation in 2003. After##@ 20 years, we have decided to transition to a new program.  

We HOPE for the future.#RareDisease #Parenting #Transition #SpecialEducators #SpecialNeeds #dayhab #dayprogram #Disability #IDD #Hope #FamilyAndFriends @amanda-buck @amanda-hvass @amanda-snyder @breecoffey @cherieehlert

We really do need to be our own best friends, our own cheerleaders and our own advocates. No one can speak up for you better than you can, only you know the true depth of your darkness.

Which is ideal when you need to speak up for yourself or ask for help and do yourself justice when advocating for your needs, hopes and desires.

Yes, friends are cool, we can share our feelings, help each other out or even just watch a bad movie and have meaningless conversations.

The simplest things can make all the difference when connecting with your friends, your chosen family.

We can often find true beauty within our friendships, when you notice a familiar laugh or smile, or hear that warm voice saying, ‘Good night, sleep tight’.

We need that beauty in our lives, it is vital.

But when it becomes a necessity, things can become toxic very easily, slowly we rely on these companions for more and more, not always, but sometimes, and sometimes can be all it takes to sour a good apple.

When you start to trust your own judgement, discernment and advice you awaken a power within you that can really help you begin living now, only then can you give your full presence and gifts to those you hold dear.

Please cherish your relationships, but remember they are an accessory, you are the necessity.

We have been looking after two Grandchildren this week while my daughter recovers from major surgery. I was watching 7 year old Abby tying her shoelaces and I remembered as a child trying to learn how to do my laces and being hit by my Mother every time I got it wrong.

Later that day I saw the movie “Golda” about the Israeli Prime Minister, Golda Meir. There was a scene in the movie where Henry Kissinger told her she should be afraid of the Russians. She looked at him sternly and told him how she used to have to hide, in fear, from the Russians as a child in the Ukraine for days at a time.

She said, “I lived in fear from the Russians as a little girl but I am not that girl anymore”.

It got me thinking how I am not that little boy anymore. In the last few years I have succeeded in calling out and bringing procedural changes at a private hospital whose errors almost cost me my life.

I successfully fought a false police accusation.

Yet, I wonder if aspects of that little boy remain. Is there insecurity? Is there people pleasing? I honestly don’t know. If that little bit does show up though I am not going to allow him to stay in fear.

What’s your name? People and life might try and call you many names. Names like, forgotten, broken, damaged or unworthy. They are not your names. Your name is also not hopeless, too much, victim or unwanted.

Your name is “precious, worthy, loved and unique “. You are a work in progress whose time to shine will come. You are not just a survivor but a thriver. You are not alone. You matter. Call the negative labels out for what they are, lies.

Hope calls your name!

Our Lord has written the promise of resurrection, not in books alone, but in every leaf in springtime. -Martin Luther

The days are like a hurricane,

The needs of all my people

Circling wildly around me,

Loud and demanding,

Determined, unceasing.

I am tossed and blown,

At the mercy of the shouting winds,

The beckoning howls,

The deluge of their cries

Soaking me to the core.

I'm a wet rage.

Ring me out;

You will find

Joy

Pain

Desperation

Hope

Fear, and

Despair.

Suddenly, the howling quiets,

The torrents calm,

And all is still.

I can breathe here in the eye,

The quiet evenings,

The peaceful times,

When all routines are satisfies

And snuggly hugs soothe weary eyes.

Here in the eye,

It's love I feel,

A quieted soul,

A grateful heart.

Renewed,

I step back out

Into the storm,

Refreshed, restored,

And re-armed,

To strive and fight

For those I love,

Knowing deep down

My arms'll never be enough.

But His love

So real, steady, and true

Has won this battle

Long ago.

He's gone before,

And goes with me now.

Sought or not,

He beckons me

To let Him carry me again,

In the storm,

As in the eye,

And forward on,

once this, too, has passed.

#Parenthood #Motherhood #MentalHealth #Caregiving #Anxiety #AuditoryProcessingDisorder #Neurodiversity #Hope

I’ve been buying myself a lot of #motivationalshirtsANDsweaters online ever since I found one that spoke to my #soul - and this one sweater pictured here is my favorite one.

It says… “Stay” with added words on the right sleeve… “The world is a better place with you in it.”

Whenever I wear this, my eyes would always drift to my arm and it brings me a little #Hope at a time of getting through this.

I want people to be more #informed and more #aware that the things we go through is a real #illness and that a lot of us suffer from it.

After having a conversation with my favorite #maillady I found out that she too was in my shoes. We both agreed that #oneword or even a #friendlyacknowledgment from someone (that let’s you know that you’re #NotInvisible ) can help us get through the day. Like another shirt of mine says…

“You are #NeverAlone - Keep fighting… everyone is fighting a battle we know nothing about.”

I just want the #stigmatoend and have people more #aware because in certain cases, not knowing how to react to something in an #Understanding and #positive way, and instead react #negatively , but not on purpose, that their reactions have the ability to #trigger us back downward, or make the rest of our day #happy

If no one told you today…

#youareloved
#youmatter
#youarenotdefinedbyyourillness
#youarenotalone

It’s an emotional day. I am on a plane about to fly to Indonesia. I will be visiting Hope Village an amazing orphanage and school pioneered by some great friends. This couple were visiting Indonesia not long after the Boxing Day tsunami where 170,000 Indonesias lost their lives.

I was at Hope Village 7 years ago. Since that trip I found myself hospitalised after a failed suicide attempt and endured a horrendous 3 year legal fight, which we won.

I am so excited to be going back there. The orphanage has doubled in size and there is now a school providing 600 village kids with an education that they would otherwise not receive.

100 % of the proceeds from the children’s book I wrote, go to Hope Village. I can’t wait to see first hand the growth this amazing place has done.

I am grateful for this opportunity and so grateful I am alive to make this visit.