Meet others living with autism: Come say hi

@cindyhanauer - good to meet you, though I realize you've been on Connect a couple of months. The story of your daughter, her autism and where she is today is inspiring.

Glad you've connected with @gingerw, and hope you will also get to know @mamacita and @sirgalahad. I'd also like to introduce you to @auntieoakley.

You mentioned you'd love to talk to young parents who’s children have been recently diagnosed. We, too, hope to bring in parents like that to discuss what they are going through with their children diagnosed with autism here on Connect. Have you had a chance to share your daughter's story with any other parents in your area? If so, how did it go?

@lisalucier Thank-you for the introductions. Yes, I hope that this forum draws a good cross-section of discussion and experiences. Regarding sharing my story- this is the first time I’ve shared it, believe it or not. Until this year, I traveled quite a bit internationally for business and am now permanently back at our home here in Jacksonville. I would love to encourage newly-diagnosed families. I wish I‘d had someone to talk to way back when my daughter was diagnosed- people with real experience. I think at that time.... even the doctors were trying to figure it out!

In agreement with @mamacita ..... my daughter is also very sensitive to sound and a true empath. In fact, when one of us would walk into a room after a bad day, our daughter would take one glance and ask, “What’s wrong?”..... even without an expression on our face and before we’d say one word. This is contrary to what many people believe of an autistic person.

On another note, my daughter also has a photographic memory (HSAM is what it’s called, I believe.). She can remember details of “the room” in events that happened 20 years ago- even the colors people wore. She can recall the exact year that a pop song first came out- even the songs that came out in the 80s when she was a small child.

Yes.....amazing. But most of all as parents, we’re so proud of how she’s navigated the world.

Thank-you for forming this group. I have a 40-year-old daughter who was diagnosed with Autism at the age of three. At that time, Autism was not well known, nor well understood. Autism is hard to understand-our daughter showed signs of great intelligence and yet, she constantly shook her hands, walked awkwardly, and learned to talk by echoing phrases. To young parents, as we were at the time, it was confusing and quite frightening. There was very little written on the topic.

Thank goodness, we went to Riley’s Children’s Hospital; Indianapolis, where our 3-year-old daughter was diagnosed with a form of Autism. I remember my husband and I leaving in tears- hopeless and sad that our daughter would be facing a lifetime of ridicule, difficulties and limited success in life. Schools at this time would put Autistic children in classes for the emotionally disturbed, because there was such little understanding of autism at the time. Our child was put in classes with violent students, and it was scary for her. Schools were not prepared for autistic children and did very little at the time to develop the right programs. Fortunately, my husband and I had a large loving family who spent every waking moment loving and teaching my daughter- allowing her to experience and adapt to life by taking her everywhere with them and treating her like every other child. God bless my Dad-recently deceased- who spent hours with our daughter teaching her math and counting money; my mother (still alive) spent hours on reading and social skills. But most of all, we surrounded our daughter with acceptance, joy and happiness.

Fast forward.... 37 years, and I’d love to talk to young parents who’s children have been recently diagnosed. Thank goodness to early speech therapy, physical therapy, a loving and accepting family, and hours upon hours of teaching..... our daughter has thrived. She has grown into a beautiful young lady, speaks well, loves to read, is happy and kind, and has a good job. We couldn’t be more proud. She is the most loving daughter a parent could ever have and our entire family embraces her with a special love.

When I look back 37 years..... I vividly remember sobbing as my husband and I walked out of the hospital - hopeless. We realize today, that none of those fears were reflective of how our lives would ultimately turned out. I‘d like to share these experiences with young parents- that with the right (and early) interventions- your child can thrive and fit into society very well. But most importantly, show them consistent love and acceptance. Read to them- even when it appears they aren’t listening. Walk with them-even though they may walk awkwardly. Talk to them normally- even though their method of speaking may be different. Hug them-even if they seem to freeze up and not know how to respond. Because deep down..... autistic children need these things as much (if not more) than every other child. Today, we couldn’t imagine life without our unique and beautiful daughter. God blessed us with one-of-a-kind and we are thankful.

Welcome to connect. I only wish that every child on the spectrum had the familial support you write about. Thankfully there is more understanding today, although I would argue that in many places and in many ways, some things remain the same. I love hearing about children and teens who are learning to navigate with an understanding of the differences. It is difficult enough for a child to find a path in the world, much less one who processes information in a completely different way. When you left the hospital sobbing, you envisioned a different life for your child, and without the understanding and tolerance of her differences her life may very well have been what you feared. Good for you, good for her, and thank you for sharing your story.

A little over twenty five years ago, I was asked to be a teaching assistant for a very special little girl. This little one had some kind of Autism, but back then we really were just on the cusp of learning about the Autism Spectrum . They did not want to label her.

We studied the writings of Dr. Temple Grandin. We went to Emory University and sat under the teachings of successful people who were actually autistic. They revealed that their diagnoses came after their children were diagnosed. We had certain techniques that we tried, and worked directly under the school system psychologist.

I had always wondered how I was able to understand my little charge. I could see her behavior in a different light than others who worked with her. It took me years to figure it out Missed diagnoses. When I finally learned I was Autistic, it was freedom

I had been diagnosed with depression, ADD, but nothing worked. Since learning I had a place on the Spectrum, it has been a beautiful journey of self acceptance.

I now advocate for those on the Spectrum. It has not always been easy, but it has been worth it all. Especially since we learned a few years ago that my little Grandson ,is on the Spectrum. So now I can use what I remember from child hood to help him. .

Our family is very close. We want those who are on the Spectrum to feel hope and encouragement. And for their families to know that we are all in this together. We can all learn from each other.
Love and light,
Mamacita Jane

@lisalucier , I will be happy to share some of the things that are near and dear to me. It is the oddest feeling, looking back at my childhood, and remembering how I felt. How I saw things from my perspective. Fast forward to the present. My precious little Grandson was given a horrible prognosis. We fought it. Those people are no longer at that particular facility. Their assessment of our Grandson's abilities and development was way off base. Not uncommon an experience, unfortunately. We knew he was smart. We knew he could be kind and sociable. We knew he could learn and be anything he wants to be. He wants to be Batman.

I will mention the very first thing that comes to mind when working with a child who is on the Spectrum. Or any child at all, really. The child must feel safe. Boundaries must be set in the beginning. The child will relax after a bit. Knowing that you are the teacher, the parent, or whatever position you play in the child's life...That you are in charge. You tell that child on their level, that you will protect them. You will not allow anyone to hurt them. And you make double dog certain to keep that promise. And, because of that, you will not permit him/her to hurt anyone else, including themselves. You assure them that you are their advocate, and that you know they will be successful on this journey of learning and living.

All of this is easier said than done. You first must have arrived at the place in your life that you are willing to storm the gates of Heaven for this child. Because that is precisely what you will have to do.

You will be met with stares, disgust, and attitudes from the pit of hell. You will question the validity of some of your friendships and family relationships. Those who will not attempt to understand what your child is going through May be given space...put on the back burner for awhile. This isn't about them. It's all about your child and your responsibility to do everything you can to help him feel comfortable in his own skin. It is a struggle. But one well worth doing.

Next time we will talk a bit more about making your child's space at home so safe and welcoming that his spirit just blossoms. He is differently wired, so very aware of everything around him. There are many different ways to calm and sooth him/her. I look forward to talking with you about some of these dealbreakers, next time.

Happy holidays!
Mamacita Jane

@mamacita, that is an interesting concept for patients of a child on the spectrum about making your child's space at home feel safe and welcoming. Will you share more about that? @gingerw and @cindyhanauer, do you have thoughts on this you might share, as well?