My name is Robin Newberger, and I live in Ojai, California, a small valley 15 miles inland from Ventura, with my husband, David, and our 5-year-old son, Daniel Hansen. Daniel was diagnosed with autism just after his third birthday. Our journey with Daniel has been our greatest challenge and our greatest blessing. Feel free to read more about our family on our blog: http://heisours.blogspot.com.
Miggy: Hi Robin! Thank you so much for participating in our spotlight today and sharing your son Daniel with us. Daniel has Autism, can you take me back to when you first realized something was "off" about your son's behavior? How long did it take you to get a diagnosis and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Robin: Around the time of Daniel's third birthday, I took him to see his pediatrician for his annual visit. During that visit, the doctor first brought up the subject of autism. She must have been cognizant of the fact that his expressive language wasn't where it needed to be and his eye contact with her was lacking. When I got home that day, I immediately Googled "autism," and as I clicked page by page by page, everything suddenly came into focus. My husband, David, and I had always noticed that Daniel was unique, but we didn't associate it with autism spectrum disorder. We had noticed that Daniel liked rewinding the same scenes in movies on DVDs over and over and over again, saying, "see again." We had noticed that Daniel would line up his foam alphabet letters in the tub across the entire span of the tile, making a straight, ordered line. We had noticed that he avoided other children his age at the park, not wanting to get close. We had noticed that when he got excited, he would flap him arms up and down and prance around on his tippy toes. These three areas that we had been aware of but uneducated about, we now learned were the three major components of autism: repetitive behavior, social regression and language delay.
The day that I sat at my computer and read about autism, I knew that Daniel was autistic. In a way it was a relief because those quirky things that I couldn't explain were now explainable. Our journey had begun. Honestly, I feel much the same today as I did then. The word "autism" did not scare me then; it does not scare me now. I believed then, as I do now, that God made my child exactly the way He intended, that he is a blessing, and that He has a purpose and a plan for his life--with autism.
Miggy: Can you explain how Daniels autism affects your day-to-day life?
Robin: Daniel has a therapist who comes to our home five days a week for ABA, Applied Behavioral Analysis, which helps him in many different ways. Early intervention is so critical, so this is a part of our daily life. Daniel has to learn how to have a reciprocal conversation, the back-and-forth turn-taking that neurotypical children learn without effort. He has to learn what different facial expressions mean -- happy, sad, excited, bored--because many children on the autism spectrum have difficulty interpreting those social "cues" and it is why they struggle with peer relationships. ABA teaches him these things and much, much more. We try to go out as much as we can into the community so he isn't anxious. We love to go the beach, walk around the mall, or go to the park. One of his favorite things is going on the carousel at the harbor. Because he has so much structure in his special ed class and then therapy right after he comes home, we are intentional about injecting fun into our day as much as possible!
Miggy: What are the biggest worries you face for Daniel?
Robin: The biggest worry we face is not being here someday for Daniel. Truthfully, as I write this now, it strikes fear in the very pit of my stomach, a sadness that I can't fully describe. We pray with all our hearts that God will always protect him, always keep him from harm when we are not here on earth to watch over him. I also fear for his self-sufficiency as he goes into adulthood, that he will be accepted and not ridiculed, loved and appreciated for his differences. I fear for his vulnerability. He is only five now, and he has made such tremendous progress in the last year that my fears may be for naught. It is my fervent prayer.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Robin: On the topic of humor, honestly, apart from my faith in God, I don't think I could survive without laughter on a day-to-day basis. Daniel, because of his language differences, sometimes says the funniest things. Very recently, as we prepared to go play outside, I told him to put on his shoes. He said, "I don't have to wear shoes. I want to wear my feet." One, it's funny; two, it actually makes perfect sense!
Miggy: You also had a video featuring Daniel go viral recently! So fun. Can you tell us the story behind the video and would you mind sharing the link?
Robin: Daniel loves garbage trucks. Monday is trash day at our house. Every Monday morning he anxiously waits for his favorite driver, Manuel, to come. On February 10th, 2014, Manuel came with a special gift for Daniel. I had been videotaping trash day and captured the whole thing on tape. So touched by the event, I posted it to Facebook, shared it with Autism Speaks, and it went viral, being seen by millions of people around the world!
Miggy: How can people best approach or respond to Daniel? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Robin: When people first meet Daniel, he is very quiet and often won't make eye contact. It's so common with autism. One thing that scares him is when strangers approach too close, too fast, or are too loud. He feels very uncomfortable when people are looking at him. It's important to remember these things when meeting an autistic child for the first time -- or the second or the third! I would say don't mistake it for bad manners. Social situations can be scary for them.
Miggy: If you could say something to the mom who just found out her child has autism, what would you say? What would you say to yourself if you could go back in time?
Robin: What I would say to other mothers who are just learning that their child has autism is to learn as much as you can about your child's autism. Be an expert and know what your child needs so that you can advocate for him or her. Don't rely only on what the doctors tell you, which often is not a lot, but do your own research. Your child will very likely need services at some point, as Daniel did. Sometimes we are placed in the position of having to fight for those services. At a team meeting where his services were being decided on, everyone around the table, the psychologist, the county regional representative, his ABA providers, and us, each introduced ourselves. After I introduced myself, I put a small 2-by-3 framed picture of Daniel on the conference table and said, "And this is Daniel." He doesn't have a voice unless I speak for him. Even if your child has a therapist or is in a special ed class, it's still our responsibility to help them make progress. God has a plan and a purpose and He chose you to walk this journey with your child. What a privilege and a high calling.
Miggy: What is the biggest lesson you’ve learned since becoming Daniels mom?
Robin: What is the biggest lesson that I've learned? I've learned so many, but I think the biggest one is that life is beautiful. Every single moment of it. That's what my boy has taught me. I learn from him every day as I see life through his eyes. He sees things so simply. I may not ever fully see it the way he does, but someday perhaps I will.
"For now we see through a glass, darkly, but then face to face: now I know in part, but then shall I know even as also I am known."
I Corinithians 3:12
That was fantastic Robin, thank you so much! I found myself nodding my head yes to so much of what you had to say--yes to our children being made exactly how God intended, yes to educating ourselves and yes to being our child's advocate. I love that you brought a picture of Daniel to that meeting... he is more than just a number, he is an individual. I'm sure that was a great reminder to everyone present. I also enjoyed the video and seeing the special bond Daniel and Manual share. It's so comforting to know there are some angels among us willing to reach out to our kiddos and help them feel special. Thanks again Robin and big hugs to your family, especial Daniel!
As always if you or someone you know would like to participate in the special needs spotlight series please email me or have them email me directly at thislittlemiggy at gmail dot com.
Have a great weekend!