Our Kids Are In There: A Gift Of Love

I hope that everyone who has a child with autism reads this story. We see in the world the things that we look for. And if we are told by experts and professional that there is no hope, that is what we will see. This is what I was told when my son Christopher was diagnosed with autism. The author of today’s post, Sarah Carrasco, was told the same. So were most of the autism parents we know. As I wrote in the beginning of the month, autism families sure could use some hope. I am so happy to share Sarah’s story here, because she didn’t listen to the so-called experts and neither should you. There is always hope! Sarah’s son David once had a “worst-case-scenario” autism diagnosis. Today, thanks to Sarah’s commmittment, he is high-functioning, verbal, and happy. Thank you Sarah for spreading hope for our kids!

My son David is seventeen and he has autism. He is now my best-behaved child – he is patient, kind and understanding. But it wasn’t always this way. David has regressive autism. He was developing fine, meeting all of his milestones and was starting to count and say his alphabet when he regressed at 24 months.

David regressed overnight. The typically developing child I had was now self-injurious, lost all language, stopped making eye-contact and became violent. By the time he was four, I was told by two different doctors to, “Put him in a home, give yourself a break” and “He will never speak, read or write. Don’t stress yourself out trying to teach him.”

I never believed these doctors.

Mothers Know Best

He is my son and I know my son best. I knew him before he regressed and no doctor or dismal prognosis for his future would ever make me forget the bright, sensitive young man he was before the regression.

I had to tell myself repeatedly to stay positive and focus on the child he once was. I knew he was in there, waiting for his mama to help him get back out. One day, when David was three and at his worst, I put on a CD of my dad playing music. David ran downstairs and was looking around saying “Papa, Papa!”. David had very limited language at the time. For him to rush downstairs, look for his Papa and call for him was truly significant. “I know you’re in there,” I thought, and “I’ll get you out buddy.”

A SIgn Of Hope

Doctors had little faith in my son, But I never lost hope of his recovery, nor did I lose faith that God would heal him. As time went on, I read article after article, book after book, trying to find a glimmer of hope for my son. One day, I was given an article titled, Daniel’s Success Story: A Determined Mother Demonstrates that Full Recovery from Autism is Possible, by Mary Romaniec. Her article changed our lives because she told me the one thing I needed to hear at that time – that there was hope for my son.

After reading Mary’s article, I started David on a gluten free/casein free diet. David’s behavior improved almost immediately after the dietary changes, but he was still violent and still lacked the ability to communicate outside of a few words. We had a long way to go to recovery.

A Gift Of Love

One night, I kneeled by his bed, praying for him and crying my eyes out, “Please God”, I begged, “Please just let him tell me he loves me. Please Lord. I need to hear it from him. It’s all that matters. Please God, let him tell me he loves me.” David stared at me while I prayed, he looked concerned but he was suspended in a world without words, without the ability to comfort those he loved. We had been working on sign-language for months at that point. He only used the signs for more, eat, and drink despite having been taught about thirty words in sigh-language.

Before I went to bed, (we slept in the same room, his bed adjacent to mine) I looked at him, tears still running down my face, “Please tell me you love me buddy. Mommy needs to hear it. This is the sign for ‘I love you’ remember?” I asked, demonstrating the sign we had been working on that week.

When I woke up the next day, I opened my eyes to find David staring directly at me. The moment he saw my eyes open he signed, ‘I love you’. I burst into tears, again, and hugged him and thanked him for telling me the only thing I needed to hear.

That day was the last day I ever listened to a doctor who spoke negatively of my son’s abilities or potential.

At seventeen, David now (tries to) reprimand his brothers when they don’t listen. He makes witty jokes. He randomly comes and lays with me, just to hug me and tell me, “I love you mother. You are the best mother.”

Our children are in there. Don’t let anyone tell you differently.

Spreading Hope

Sign language, picture cards, word cards and assistive technology are all means by which our kids can communicate. If your child struggles to read, this phonics song below can teach a child to read and use word cards. There is always a way. Your child is in there.

Never give up.

For more information on recovery, dietary interventions, therapy options, insurance etc. please check out the handbook I wrote on autism, The Autism Helpbook.

 

Sarah Carrasco is the author of The Autism Help Book, which offers practical advice on self-care, obtaining a diagnosis, insurance and Medicaid, biomedical interventions, therapies, education, preparing for adolescence and adulthood, legal considerations and life with autism. She is a coordinator for The Autism Community in Action (TACA) for the state of Colorado and an educational advocate for children with developmental delays. Sarah has written curriculum on autism for daycare centers. She has mentored families impacted by autism for over ten years and works to ensure the best outcomes for children regarding health insurance, education, biomedical interventions and wandering prevention. She works with her local police department, providing materials to officers pertaining to: recognizing the symptoms of autism, legal rights of people with developmental delays, and wandering. She lives in Colorado with her three sons. Her eldest son David has regressive autism. When David was diagnosed with autism in 2005, he was considered to have “worst-case-scenario for autism” by specialists due to his highly aggressive and self-injurious behaviors and complete lack of verbal communication. Today, thanks to Sarah’s commitment to healthy diet and detox, David is considered high-functioning. He is now verbal, learning job and money management skills, he is happy and all negative behaviors are a thing of the past.