“More milk”
- the sweetest words I have ever seen a child sign. Those were the first words my son expressed in any form of communication. At age 3.
My son is Deaf-Plus, which refers to a child with a hearing loss and with an additional condition that affect them medically, physically, emotionally, educationally, or socially. Instead of viewing this as a negative term, I see it as a gift.
My son, Grayson, is Deaf and has Autism. His autism disorder is not the same as an autistic child with normal hearing. Grayson's mind does not process the same way that other children's minds do. This world may seem "too big and too different" for him to live in but he is surrounded by people who love him. Grayson learns in unique ways and his thinking process is extraordinary. For instance, I'd say he is five years old whereas he would say 2040 days old or 291 weeks and 3 days.
Grayson was diagnosed with the autism spectrum disorder at age 2. As a parent, I was relieved that I was not crazy. I first suspected when he was 6 months old as he was noticeably different from his older siblings. My motherly instincts told me something was up. He would lie down for hours, being so calm - there was hardly any crying or fussing. I couldn't get him to make eye contact. He'd be more interested in observing a shining light than looking at my face. He did not "play" in the same way that most babies did.
I had a hunch that he might be autistic. After it was confirmed, the first few years meant a serious learning curve for us. Those years were the hardest, not really knowing what to do. I was constantly researching! There is very little research on deaf children with autism. I met with countless experts, researchers, and parents of autistic children - anything to get more information and resources. Recently, I attended a conference in California on "Deaf and Autism". I learned that we cannot expect our autistic children to adapt in our world. Instead, we need to adapt in their world. I also learned that we cannot teach our autistic children the same methods we learned as a child but that they will show us what methods they are comfortable with.
While my son is considered “high functioning” on the autism spectrum, most people rarely get a glimpse of our life - the struggles and the disarray of emotions that our family goes through on a daily basis. People in general do not realize the level of difficulty and frustration that it takes to fight the school system - just to acquire a fair education that Grayson is entitled to. Year after year of fighting the school district for services that would give Grayson equal access to education was exhausting for me as a parent. Also, most people don’t realize the guilt and embarrassment that I feel as a mother when the society shuns my child or shame my child for the way he behaves in public. They simply cannot understand why I don’t show Grayson "who's the boss”.
Enrolling Grayson in North Carolina School for the Deaf in Morganton was the most difficult decision I ever made for my son as we live over two hours away but I knew it would be a wonderful opportunity for him - for Grayson to be in a language-rich environment where he would experience barrier-free communication at all times. North Carolina School for the Deaf has a remarkable team of teachers that Grayson adores. His teachers work closely with Grayson and communicate with us on his weekly progress in which we continue the "lessons" at home with him.
Grayson has made amazing strides in communication and interaction! When he comes home, he shows me all the new signs he has learned at NC School for the Deaf. He now can spell his name, count up to 30, knows all colors - something he could not do when he was attending the local public school six months prior! I had no clue, zero clue, what a language burst was. Not until it happened. I've always believed that one way or another Grayson would turn out fine, that he somehow would do all right. But after witnessing this "vocabulary explosion" in Grayson, I felt a deep conviction that all would be well.
On top of everything else, he is improving at making eye contact with his family members and close friends. For those who do not understand, this is a major leap! Also, he has just started giving hugs with people he is familiar with - which is uncommon for the average autistic child. And I must tell you, he gives me the best hugs!
Grayson is now 5 years old. We have come a long way. With the support that we receive from NC School for the Deaf, I am less fearful and less confused as a parent. It brings me great joy and relief knowing that he is growing intellectually and emotionally.
I get excited when I think about all those new things that are happening for him. I can't help but wonder about things that have not yet happened. I sometime catch myself thinking too far in the future: Will Grayson be driving? Will he go to college? Will he be fully independent? I remind myself that his future is bright - with all the new technology that is being invented for children with autism and that he is where he needs to be, thriving at NC School for the Deaf.
Tips for interacting with children like my Handsome Grayson:
- Do be more patient as they need more time to process information and the environment.
- If they receive too many simulations, please take that into consideration and respect their frustration. For instance, they may be frustrated with fluorescent lights in the store and not with you.
- Please understand that there is more to them than what you see. They have talents that are truly amazing and a thinking process that is just beyond our imagination.
- Don’t demand that they maintain eye contact. It takes time for them to make eye contact.
- Be kind and flexible as they are often less able to adapt to trying new things or new situations.
- Learn how to show interest and affection in ways they like.
- Most importantly, they love positive reinforcement! So praise them. Good compliments never go wrong. You will be getting smiles!
Meredith Kaplan, the world's luckiest Mom.
- Meredith can be reached at: 336-543-2418 (phone/videophone)