hope

I have now had four sessions with my new therapist and the last two of those have been utilising EMDR. As a guy I always like to understand how things work. For that reason I find EMDR somewhat frustrating. I have no definitive answer as to how it works but I can say unequivocally, it works and it works incredibly well.

As I recall traumatic experiences from the last four years the ones we have processed no longer bring fear, pain and a sense of dread. They are not just matter of fact memories.

Now I am aware EMDR won’t work for everyone. It needs to be administered and managed by professionals in that are.

For me I am so grateful for the breakthroughs I am experiencing.

I pray you get the breakthrough you need too.

We came to the beach today, even though it’s the middle of winter and it’s blowing a gale. There is something really special about the beach in the cooler months.

Looking at the rocks and the way time has etched lines and beautiful colours, marked into the rocks, it reminds me of our journey.

While pain and abuse from trauma are really challenging at times, our lives today can be a great reminder that we are still here, we are survivors who are rising above our past and stand as victors, not victims.

I finally have a diagnosis. My doctor was perplexed but x-rays revealed I have severe osteoarthritis. The sudden onset was attributed to 3 weeks in Asian heat and then coming back to our Australian winter.

Treatment options are now many. Mainly pain relief and keeping my hands warm. I will consult a dietitian to see if there are foods that hinder or help. Now that I have some real pain medicine it’s been a lot better.

Getting old is not for wimps. It’s great to finally have an explanation. Thank you so much for your prayers and encouragement.

I’m back, kind of. It’s quite challenging typing this post as my hands are still very painful and unable to bend much but the desire to post is stronger than the pain.

My doctor is waiting for the results of more blood tests and X-rays before there is a definitive diagnosis of what is causing my crippling hand pain. I joking said to my Wife the other day that “I feel like cutting my fingers off”. Later that day I sliced the top of a finger off doing a maintenance job. Ouch. The fingers will remain in tact.

The thing about pain is it wants to be in charge. It wants to dictate what I do and don’t do. And to some extent it has a point, but, I have a life to live.

So, I am trying to maintain my previous work load as best I can. I am being wise. As winter sets in I am wearing gloves a lot and using what medical pain relief I can. At the end of the day the truth is I have eternal life but this pain doesn’t. I am being held, tightly, by Jesus. And so are you.

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.