Category: Hope Center 4 Autism
Today was a normal day, as normal as the can be with 12 to 15 kids with autism in the building working to change their lives. It was busy and productive for me, donations of three used computers were brought in today as well as a hundred dollar donation all from a friend of a friend. We had a meeting about our upcoming event that features local artist and our clients singing and enjoying them selves at Magnolia Motor lounge Dec 16 (find more info on FB events and the flyer posted)
I had a second meeting by phone with a past volunteer asking how she can re-engage and help gather support for the cause. Within a hour of that call she had gotten an adult size bike we needed donated for one of our boys. What a hero! What a great person.
As I am getting finished up and preparing to leave for the weekend, I hear Nadia and Karina talking and I hear a little voice. I HAVE to walk over and see what’s up…….this little small fry, 3 years old was non verbal just 5 short weeks ago is now chattering up a storm, repeating everything Karina says. What a exciting blessing. emerging speech.
I am blessed.
Autism looks different with therapy,
Autism the way I see it at Hope Center 4 Autism
Please excuse my typos and poor writing skills but I hope you hear my heart. #its4thebabies #nadia #letstalk
Today was a busy day at Hope Center 4 Autism much like every other day. I saw a new client, she is 25 yr old and so amazing. Had a few meetings and finished with a parent meeting.
The parent meeting this afternoon was my last appointment of the day and well, I do not know how these parents do it. Four kids, one with autism, dad is a first responder so he is gone a lot, mom is a teacher. WOW, they are so awesome.
They are so sweet and kind, seeking help, wanting to do work at home to help their son. Layers and layers of information being shared, very quickly, our one hour meeting quickly turn into 2 hours. They need help with getting him to eat, timeout, sharing, taking turns, speech, birthday parties, getting their families to believe he has autism, the holidays and sleep.
What would you pick to work on? Where do you start?
We have to prep parents for change. They are in survival mode, doing the best they can and I want them to change what they are doing and do things our way? That cannot be easy. They don’t really know us very well at this point. It has to be scary to think about changing even if it is to make changes for the better, change is always hard. So today we talk a lot, we share a lot and we listen a lot.
We pick one thing for parents work on at home and we start a plan. We pick taking turns. Mom and child will play a game, they will follow a plan to play and take turns, mom will use the words we set up for her to use in the plan, they will play, they will take turns. This will create change. Mom will collect data ( keep notes) Once they are successful to our BCBA we will add to the plan. Everything is broken into small steps and taught one step at a time. This is how hope changes things, baby steps so everyone is successful.
I am blessed.
Autism looks different with therapy,
Autism the way I see it at Hope Center 4 Autism
Please excuse my typos and poor writing skills but I hope you hear my heart.
-Susan Wood, Executive Director
Tonight was our holiday open house, We do this every year and well, to be honest, there were very few folks who attended today. I could be sad and disappointed but I am not at all, I am thrilled.
Success looks very different at the Hope Center for Autism
Tonight was a bucket list kind of night, tonight was a gift.
Last April at our autism awareness rally one of our clients told me he wanted to talk in the microphone like he saw an older boy who often speaks with me does. I explained he had to work hard and practice speaking clearly and we would see.
Before I go any farther let’s step back a few years, you need to understand this child was totally nonverbal at age 4, would not make any eye contact or allow you to even touch him much at all. He was a hard child to work with at times.
OK, back to today at 12 years old, he stood before over 20+ adults he had never met and he answered questions about his day. He did not get a microphone but he was amazing. It was a surprise for him and his parents that I was going to ask him to talk tonight, they would have all been so nervous…I was a little nervous but mostly I was excited. I prayed it would go well. What an amazing moment to see a child reach such a goal. From nonverbal to sharing his day with strangers. Bucket List for me and my boy.
Then at the same time, there was a second young man attending, who shared about being bullied in public school and a little about his current school. And about his sock drive for the homeless, what? A person with autism cares about the homeless? A person with autism has compassion?
I am blessed.
Autism looks different from therapy,
Autism the way I see it at Hope Center 4 Autism
Please excuse my typos and poor writing skills but I hope you hear my heart.
-Susan Wood, Executive Director
I remember the day as if it were yesterday. I had just walked in the door at my mother’s house to pick up my son. As I was finishing up and getting him ready to get in the car my mother said ten words that shattered the wall of denial I had built up for a couple of months “Do you notice he doesn’t respond to his name anymore?” To say that I lost control of my emotions would be an immense understatement. I took out all of the anger I had built up behind that denial on my mother (I have since apologized.) I knew what she was implying and that meant that it was real and it was happening to us. I spent the next couple of hours under the mask of Zoloft, which I am not proud of. We spent the next few weeks researching and waiting on doctors to confirm what we already knew.
When he was first diagnosed, and even before, it was hard for us to really go anywhere. When we did people would look at us funny or comment on his “unique” behavior. When you are first starting your new role of parent nothing hurts worse than people judging your child. It’s not easy to learn how to adapt your way of thinking in order to survive mentally. People can be cruel and put in their “medical” opinion when in fact they have never been to college let alone medical school. Believe it or not, a woman actually told me that if I only loved my child more he wouldn’t have autism.
Lucky for her I was still in the shock stage of the diagnosis and really didn’t have my warrior’s sword hanging from my hip. There are constant roadblocks with autism…you make three strides forward and take fifty giant steps backward. As with any disease, the stress of the diagnosis affects the way the babies heal. We had to stop and think…”Where do we go from here? Do we deal with this by ignoring it until it gets worse? Do we jump in feet first and swim until we run out of breath? ABSOLUTELY! There was no way I was gonna lay down and let this world walk all over my baby. We decided, as a family, to fight and fight hard.
I have had to pull my screaming child out from behind the toilet because a plane passed over and he didn’t know how to process, what we “typical” people would call a simple background noise. You see for most people with autism there is no such thing as background noise. All of it, the water running through the pipes headed to the sink, the swishing of the air surrounding the fan, the dog barking three houses down is all upfront noise.
When my son’s tummy hurts, which is inevitable with children with autism, he has never been able to tell me. Imagine having a headache and not knowing what it was, not having any way to ask someone what was happening and not being given anything to help with the pain.
My son would repeatedly throw himself into the couch tummy first to combat the pain. From our eyes, it was absolute torture and we had no idea how to help him. As cheesy as it sounds it was an episode of Oprah that steered us in the right direction…
Eleven years of helping families find a new normal….
It’s hard to remember life before the Hope Center 4 Autism. It often feels like Hope Center for Autism has filled almost every waking moment of my life for the past eleven years. I tell people we have three children, Lindsey, our firstborn, Adrienne, our second, and then “Hope” the perpetual toddler that keeps us on the move day in and day out. It keeps up some nights and the worry never stops. Hope is on our mind at all times. But we are blessed.
We are blessed to do something so amazing every day! We love our jobs, we love our staff and we love the families we serve.
Eleven years. Many families. Many stories. To each of you that have been part of the past eleven years, thank you. Thank you for this honor. Amazing things have happened in these eleven years. Many non-verbal clients have begun to speak. Hundreds (it seems like thousands) have been potty trained. Families have found their new normal and are living their lives again.
Let’s look forward to the coming year. One month, one day at a time. One success, one goal mastered, one word spoken. Take it all in stride.
Thank you all of you who have walked with us.
To Nadia and Lindsey who help found HC4A and have worked tirelessly since day one to ensure the high-quality therapy every day.
To each and every family who has ever honored us by allowing us time with your child.
I say it often, I am so blessed. Most people live their entire life looking for their calling, but not me. I know why I’m here.
Today I cried with a mom, she said that today she can now begin to understand her son. Her son’s desire is to be like everyone else. Then there’s another mom crying because her son needs more therapy but the funding is not there. And there’s a third client who threw the kids ball over the fence because they wouldn’t play with him. Pretty normal kids stuff at times and then sad and maddening at times too.
Then the hardest one today, a new mom asked me some heartbreaking questions, “How much therapy does he need to make the autism go away? We can just get the right amount of therapy and he will be normal right? We do what the Dr says and it will be gone, right?”
With tears in my eyes, I had to explain to this sweet woman that it doesn’t work like that. This is a very hard thing to explain. She cried.
Eleven years of walking beside families as they begin the journey to try to heal and find a new normal
Susan Wood
Executive Director/Co-founder
I was just like you. I gawked and judged anyone who mentioned medicating his or her child. “They did not try hard enough,” I would say to myself. I judged. Now I regret every rude thought that entered my mind. To those who still silently judge, this is for you.
Those who love us know how hard I tried and continue to try. I wholeheartedly believe that nutrition and a clean diet can be game changers. I wholeheartedly believe that biomedical treatments for kids with autism do work. I wholeheartedly believe that ABA therapy changes and enhances the lives of those on the spectrum. But I also know that a year ago I was hiding. We had stopped all our activities and outings. I would leave him with the babysitter longer and longer each day because taking him to a store was not an option. Years ago, we had already surrendered most of our freedom of being able to go to birthday parties, restaurants, and any place typical children may be.
Parks were our outlet for many years; they allowed him to roam freely and play without disturbing others. But by this time we had stopped going to any park that had ANY person there. We only went in the wee hours of the morning when we could be alone. Empty parking lots became our “outings” because my kids could run and play freely- and when his outbursts became unmanageable, he could safely and quickly go to our car to “scream it out” and no one would judge us.
I was scared. I was desperate. Every time he had an aggressive episode I would lose more hope, more confidence in my ability to manage him on my own. His physical strength was growing but mine remained the same. It was only a matter of time before his strength would surpass mine. Many episodes I watched helplessly as he tore our home apart and beat himself in the head mercilessly.
My world began closing in. I began to shield my friends from the horror that we lived every day. Even those closest to us did not know how bad it got. No one lived it the way I did. How could they not know? Because I hid it. Silence and smiles covered up the tears and physical marks from outbursts- the pain in my soul hid behind my fake smile.
I would like to tell you that the aggression was the worst part, but I would be lying. It was the screaming. Car rides (2+ hours round trip) were unbearable. We have all sat through a horrendous car ride with a baby or toddler crying- multiply that noise level and frustration. This was every single day, every time. Every morning on my way to work. The screaming was relentless. It pierced through my ears and made my brain shake. Having any type of conversation with my other children was impossible. My middle child began wearing headphones in an attempt to block the noise. The baby had to suffer through the torturous screams as keeping headphones on a toddler is… well… if you have a toddler you know.
The constant, hours and hours of screaming that finally made me say yes. Yes, we need help. Yes, we need to medicate him. I finally surrendered to the fact that I could not allow this to continue any longer.
Somewhere out there, there is another family in crisis. Hiding the ugly autism and putting on the brave faces needed to survive this world. I know this because I lived it.
So if you hear a momma talking casually about the medication her child is on, just know that the choice she had to make tore her up inside. Know that she questions herself every day when she looks at her child. Know that she agonized for weeks, months, or years over this decision. Know that she has tried it all and will continue to try. Know that it took everything in her to admit that she had lost control. And while she doesn’t need your approval, she most certainly doesn’t need your judgment.
We are so excited to welcome Dr. Temple Grandin to Fort Worth again during our annual fundraiser, Saddle Up for Autism, on April 18 from 6 p.m. to 9 p.m. at the Cendera Center in Fort Worth. It’s an honor to bring this opportunity to see the Dr. Grandin live to our community and her ability to share her story of triumph.
The month of April is Autism Awareness month – 1 in 37 children in the U.S. are diagnosed with Autism Spectrum Disorder (ASDs) a year. Saddle Up for Autism is our opportunity to bring awareness to autism and raise funds to support the Hope Center that relies on donors for the necessary dollars to treat children with autism.
The western-themed event will include dinner and a cash bar. Dr. Grandin will be available to sign books, which can be purchased on site. Tickets are on sale for $100 per person. Tables and sponsorships are also available. Eligible sponsors will have access to a special VIP book signing prior to the event. All purchases can be made online.
For those of you who may not know Dr. Temple Grandin, she is a prominent author and speaker on both autism and animal behavior. She is an expert in animal behavior who has dramatically impacted the livestock industry. Dr. Grandin was depicted by actress Claire Danes in the 2010 HBO Emmy award winning movie, Temple Grandin and is an American professor at Colorado State University. She was inducted into the Cowgirl Hall of Fame in Fort Worth in 2011.
“Seeing Dr. Grandin could be life-changing for so many families (of children with autism) because she’s so encouraging – to see how successful she is and how she navigates the world,” said Susan Wood, co-founder and executive director. “With the right education and encouragement, they can see that their child might be able to someday do things that are beyond what they’re thinking of their child’s capability.”
All proceeds from Saddle Up for Autism will directly benefit The Hope Center for Autism.
We hope to see you all there!
If you have any questions regarding the event, please contact Adrienne Wood (Adrienne@hc4a.com) or Kristy Leedy (kristy@kmleedy.com) or call us at 817-560-1139.