Apart From the Crowd: Isolation in the Early Years of Diagnosis

Even before the official diagnosis of Asperger’s Syndrome, we knew our son Sam walked apart from the crowd. His early intense interest in a subject matter, and not in his peers, was the perfect mix for oddity starting the early sociable elementary years.

Aspergers Apart from the crowd

While we, as Sam’s parents, grew to walk alongside (and later celebrate) the unique perspective Sam had on the world, it was me who was shocked to be set apart from the crowd.

What If It Snowed In San Antonio?

Caring for the Caregiver

This is the third installment of my piece speaking about the health of a caregiver and it has been an interesting journey these past weeks. We as caregivers get in such and stay in such serious modes, that sometimes it takes something drastic to pop us out of our self imposed prisons of heaviness and sometimes fear. Last night in San Antonio and much of Texas it full on snowed, now for some of us who were raised around snow, (my parents were bi coastal people), this could have seemed mundane but it was not anything of the sort. I was so happy and joyful that it was snowing, I surprised myself and as I looked around me, everyone and I mean everyone was smiling and laughing and making snowballs and snowmen. Then it hit me, it hit me why I had to wait till this very moment to write this very thing. Life and it’s tragedies are real but in those moments of lifting and or explaining, or seeing people’s faces in reaction to perhaps a behavior your person was exhibiting, in those moments the divine breaks in. Now maybe it’s not snow in the south or something as drastic as that but I believe wholeheartedly that we are given sweet miracle moments that release us from the prison and remind us that we are free to live and enjoy and to find joy in the Big and little things in life. I can tell you, I love each and every one of you who are struggling to be, when you don’t even know if you can put one foot in front of the other. I send you thoughts and knowledge that you can find the divine and joy in your task of caregiving, you just have to seek them, to go after them because joy can seem fleeting like the melting snow but the take away is this. When we can choose to see the beauty in a smile, or in a victorious moment where we somehow connect to and with our people, then that is where we see the miracles happen of this season and all year round . We may feel exhausted and cranky sometimes as caregivers but let us remember the beauty we are giving we get back in unexpected ways. Seek those moments and I know you will not be disappointed.

Joy and Peace,

Dr. Ghia

281 772 5843

dr.ghia7@gmail.com

 

Tis the Season to be Simple

Creating your OWN holiday traditions

My family, from back since when I was a kid, often didn’t have money for presents. Sometimes we would hand-make presents, bake goods or make coupons for favors like “I will make your bed for a week” or “Do your chores.” One Christmas we didn’t even know if we would have electricity…much less a tree.  A nearby tree lot donated a tree to us, they even dropped it off at our house, after my little brother went over and gave them a sad-faced orphan look. Many Christmases were just like this.

christmas

One Christmas Eve, we sat in the dark and just told old stories about our family origins and more recent memories. Each of us also wrapped up that ‘something special’ that we wanted our loved one to have. To this day, it is still the best Christmas I can remember as a child. Today with my own children, I find it is better to just keep it simple.

Suspect Aspergers?

So did we, and this checklist helped

Our son has Aspergers Syndrome. However, getting the diagnosis didn’t come easy and the path to that diagnosis was rocky to say the least. That was over 10 years ago and still the following checklist we received from our school district is the best heads-up to having Aspergers Syndrome that I’ve seen to date. It cuts to the chase.

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The following is only meant as a ‘checklist’. Remember, this is not an official document, and is only meant to act as a flag for a strong suspicion of Aspergers Syndrome, a doctor or trained therapist would need to make the official diagnosis.

However if you are looking for a guideline of sorts, it doesn’t get much better or black and white than the form below. It was spot on for us describing our son Sam. We’ve also put it in a downloadable format at the bottom. May it lead you towards illumination!                  -Jennifer Allen/Aspergers101

How Do People Diagnosed With Autism Get Hired?

What kind of agencies are out there to connect me, and my child’s skills, to a potential employer?

My name is Raeme Bosquez-Greer.  I have been an Employment Specialist for the most challenging students for over 20 years. Challenging in my vocabulary means that they are harder to place in a competitive employment setting.

All states have agencies similar to Texas Workforce, a department of rehabilitation and AACOG, which I’ll refer to as “The Agencies” for the remainder of this blog.  These are the main agencies the parents of a 15+ year old student can go to for their first steps in seeking training, job developing and employment.  This umbrella of agencies contracts third party providers to complete services.  These providers, like myself, specialize in a variety of disabilities including  Autism and Neurodevelopmental challenges.  We are paid commission for the services that we provide.

The Agencies mentioned above will educate you regarding all the services they offer either themselves or through the 3rd party providers. They will give you a list of providers to select from. You call the providers on the list and interview them with questions specific to your son or daughters needs and you select the provider that you want to work with.

The agency will give you example questions but you can also ask your own based on what best fits your child.

Example questions you might want to focus on are:

  1. How long have you worked in the field of vocational rehabilitation?
  2. What is your success rate with students with Autism or related challenges?
  3. What are your credentials?
  4. Describe your most challenging case and did you have a positive outcome?
  5. What are the most common barriers to overcome for my son or daughter to become successfully employed?

For the state agencies, a student can begin the paperwork process as early as 15 years old. A vocational representative is required to be at the high school a minimum of once a week.  I recommend you contact your child’s case manager frequently and ask to make an appointment with their appointed vocational representative.  Start services early so that your child has time to learn the skills that they need and overcome any barriers by the time they graduate.

An example of my own daughter receiving services.

Look How Far We’ve Come Together!

Aspergers101 is dedicated to you. I created this resource through a reflection of my own need to gain daily information on raising my son diagnosed with Asperger Syndrome. After yearning to know why our son Sam divided so quickly from his kindergarten, 1st, 2nd and then 3rd grade classmates, we learned of a form of Autism called Asperger Syndrome. Once diagnosed, I quickly immersed myself in learning all I could about how my son functioned. What set him off, why the distance and most importantly, how we as a family could help Sam survive without us as we age.

Aspergers101 saved us really. In providing you with the daily information I craved so many years ago, it’s work kept the attention on you, your need all while working on Sam’s success. He became a strong advocate out of his own desire to shine light on a path less traveled. Sam has now taken the lead in workshops, conferences

and training to describe what it ‘feels’ like to have Autism. He is honest about the challenges but positive about the attributes. He has grown into a young man!

I’ve always said, don’t think of Autism as a weight, but a pair of wings in which to soar! – Sam Allen

It’s a success story yet you know as we fight for our children diagnosed with autism and ascend that steep hill at an exhausting pace, there comes a time, a moment, that we should pause our climb to look how far our child has come! This is one of those times.

L to R Charlie Allen, Samuel Allen and Jennifer Allen

 

Our younger son Charlie and I attended the Corporate Philanthropy & Non Profit Awards luncheon from the San Antonio Business Journal recently to support Sam as he was a finalist in the category of Volunteer of the Year for a Non-Profit. After the finalists were acknowledged and the winner, from a nearby table, was announced we relaxed and enjoyed the dessert before us. It was a total shock when, at the end of the luncheon, the “Spirit of Giving” Award was presented. As they began to describe the person of honor…it became apparent it was Sam! As he made his way to the stage a rousing standing ovation took place for a young man who was once told “you can’t….” by a doctor oh so long ago. They say it takes a village to raise a child with Autism…our village consists of God, a dedicated & selfless father like Herb, a supportive and protective brother with the heaping heart and soul that is Charlie, some very special educators and and handful of family and friends who are not afraid to embrace ‘different’ for all it’s glorious beauty.

Last question (to Sam) in the article: What advice do you have for someone who would like to get involved in a nonprofit? 

Just remember you are doing this for the good of the people. Seeing the smiles on their faces will pay off more than the money ever will. Be prepared to be a better person.” – Sam

There is such an instant bond with any family raising a child with special needs. A look of  “I get it, the challenges, loss and the euphoric highs at achievements deemed ordinary by neurotypicals”. In an instant this bond is acknowledged and suddenly you don’t feel so isolated. I want to reach out across the internet divide to thank you for allowing me to connect with you. You have been a huge part of my family’s journey and Sam’s moment of success!

by: Jennifer Allen

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The article was published on November 16th 2017 and written by Tricia Schwennesen, the Associate Editor of the San Antonio Business Journal.  Here is a link to the full story: https://www.bizjournals.com/sanantonio/news/2017/11/16/spirit-of-giving-samuel-allen.html

A Day with the great Eustacia Cutler!

Note: This was one of our most popular posts and we thought it worthwhile to share again… 

Occasionally in life, if you are lucky, you brush alongside greatness. Not celebrity, but greatness. A person truly inspired to invent, revolutionize, and create with the added momentum to actually implement their gift toward worldwide betterment.

I was blessed to have been afforded many hours with such greatness.

Eustacia Cutler was born into a privilege that most only have viewed actress Grace Kelly portray on film. Her book, A Thorn in My Pocket, depicts her life in a nostalgia that few today can even begin to imagine. Her Cotillion, the Dedham Polo Club, times at the Vineyard, life at Cambridge, Harvard, and stories of shared company of notables such as Winston Churchill, George Gershwin and Robert Frost. Talk more with Eustacia, and you will learn of her father’s invention revolutionizing flight. However, all of this is not the sum of the greatness of Ms Cutler. You’ve heard the statement not everything that glitters is gold? You see, Eustacia was married and had 4 children, one of whom had Autism.

Eustacia-Cutler

In the 50s the pressure to institutionalize such a child came from doctors and family members. But when the pressure came from her husband, she went completely against the grain for the sake of her child, Temple.

Yes, as most of you know Eustacia Cutler is the mother of Dr. Temple Grandin. Dr. Grandin who went on to revolutionize the cattle industry as well as turn the world’s perception of Autism on its ear. Most of this information you probably already know, but the part you do not know is the day I was afforded time alongside Eustacia Cutler.

The 23rd Annual Texas Autism Conference was held in Corpus Christi this past week, and Sam and I had been asked to speak at one of the break-out sessions. The keynote speaker was Eustacia Cutler, who at the age of 88 offered such valuable and insightful information to the thirsty crowd of educators, parents and professionals, they were brought to their feet more than once. Her clarity, concern and connection with all in the room (primarily the mothers) intrigued my autistic son, Sam who was one of 4 to jump at the chance when the offer came to come up to the podium alongside her for a personal Q & A. When Sam (one of very few males in attendance) approached her and announced his name, and that he had Aspergers Syndrome the applause resonated with acceptance. Sam poised the question if Ms. Cutler was familiar with Moore’s Law which states that technology will grow at an exponential rate and if so, how does she perceive it will affect people with aspergers? Without missing a beat and looking my son straight in the eye she stated we, as humans, have a challenge ahead of us. Technology is essential, but perhaps Sam could be a forerunner bearing the seemingly impossible task of keeping the human factor within the technology field.

Her mind ever-sharp and in the moment allowed for many ‘ahh’ moments to walk away with. Here are just a few:

Concerns About Solitary Sons with Aspergers

Reader Responses by Ken Kellam

My son, now 30yrs old has had difficulties since childhood, and we know he has Aspergers. During his teens he was extremely angry and sad but he came through this period. Today he lives independently, has his own home and car but for the past year he has not spoken at all to anyone. His life is restricted to his job, which is in jeopardy because of his refusal to speak to his co-workers. He was visiting me on Sunday but now that has ended. He literally speaks less than a “Yes” or “No” to anyone. We have been to social service, doctors, clinicians, speech therapists, psychologists, and he refuses to see any of them. Everything I read online is about children. Any advice?

-Doug

Perspective

Letting Go of the Grief

Taking Care of the Care-Giver : An Aspergers101 Exclusive Series

We welcome our Aspergers101 readers to a series dedicated to you, the care-giver. Pause and re-fresh as Dr. Ghia Edwards takes us into the second of a series of four blogs aimed specifically toward you.

Caregivers, we are a special breed, we push through the pain to attend to the needs of those we care for but did you know that grief is a strong part of the lives of the caregiver. The medical definition of grief:

Grief: The normal process of reacting to a loss. The loss may be physical ( Such as death), social (Such as divorce), or occupational ( Such as a job). Emotional reactors of grief can include anger, guilt, anxiety, sadness and despair. Physical reactions of grief can include sleeping problems, changes in appetite, physical problems, or illness. https://www.medicinenet.com

When we are in the caregiver role, we can lose ourselves in the role we play and in that loss comes the grief. We no longer get to necessarily go to lunch and dinners with friends like we use to, or grab a cup of coffee with a family member. We don’t get our usual alone time or get to finish that clay pot we started to create in that art class, sometimes we just are at a loss for the things we have given up, albeit willingly. 

There is such joy in caring for the people that we love but there is a tug of war that can happen and take over on the negative side, IF we are not actively pursuing our own healthy mindfulness state. Below are 10 helpful suggestions of how to heal your soul and below that, I am giving you a tool of self assessment on stress and depression of a person in our roles. After you score it please reach out and share the results with a safe person, clergy, friend, therapist. if you don’t have that person in place yet, pick up the phone and call my office, we understand and we care. There are many of us who understand the Spirit,Soul,Mind and Body process that the caregiver goes through but I say we need to bring more joy to the journey and that is only done in us realizing that we have to face what we are going through, be real with the circumstances and proactive in our own healing process.

How to Help HEAL YOUR  SOUL When You are Grieving: