Forward
Give Me Hug is a collection of thoughts and experiences helping my daughter, Isabelle, discover herself while learning to live with Autism. As much as she is learning to live with Autism, my family and I are also learning to live with it.
I hope to be as honest as possible. In truth, this has been away for me to cope with my grief, fears and anxiousness. It has also allowed me to celebrate and enjoy the little victories in my daughter’s development. There will be tears and joy as I recount these experiences. I am a bit anxious about putting myself out there like this. My wish is for those father’s and family members that care for an autistic child to know that it’s okay and completely natural to have a roller coaster of emotions. Your time and devotion to helping your kiddo be the best version of themselves will never stop, and if I’m being completely candid, it never will as long as you are on this earth. It took me a long time to understand and accept that, doing so helped me be a better father to my daughter.
Give me hug is what Isabelle would ask everyday. Most of the time, I think she is asking for a hug for comfort and security. But part of me thinks Isabelle is asking for a hug to tell me, “it’s going to be okay, Papa.” I hope the sharing of my experiences make you feel like things will be okay on your journey.
DIFFERENT
My wife, Annabelle, gave birth to twins Isabelle and Conor in October 2007. I was 29 just about to turn 30. Annabelle and I were so happy and excited for our future life. Over the next year and a half, there were many happy moments, sleepless nights, first sounds, first steps, and planning for the future.
When the kids were about a year and a half, Annabelle noticed a difference in development between Isabelle and Connor. Connor was more talkative and engaging with others, while Isabelle seemed distant, played to herself, and often stared into nothingness. Conor’s speech developed commensurate with his age and began to become distinctive. Isabelle was still struggling to develop coherent sounds. Most of the time her vocalization was high-pitched or baby grunts. When Conor would engage in talk with us, it was a stream of back and forth questions — answers, inquisitive looks, wonderment and laughter. When we tried to engage with Isabelle, she would stare into our eyes, as if she was looking right through us. I acknowledged these differences too, but it didn’t concern me as I came to the conclusion that kids develop at different rates. However, Annabelle, being a pediatric ICU nurse, was much more experienced than me in child development. Right off the bat, Annabelle felt Autism could be in play. After all, she has a nephew on the Autism spectrum and was at least tangentially familiar with the developmental delays. At that point, I knew nothing about Autism. I didn’t know what to think. Could Isabelle be Autistic? Maybe she is just a bit delayed and she’ll be okay by age 2. Maybe she’ll grow out of it. I think my mind was trying to put up defenses for what would be an eventual diagnosis of Autism, but my mind and heart could not go there. I feel guilty, but I tried to not think about it. Maybe if I didn’t think about it, it would never be Autism. Naive of me.
As family members and friends came by to see the kids, I became hyper aware that they also noticed a difference between Conor and Isabelle. They would ask, why is Isabelle staring out the window? Or doesn’t Isabelle respond to our questions? It irritated me. I somehow felt that her lack of development was our fault. It hurt.
Annabelle secured a meeting at the County’s Regional Center for an evaluation of Isabelle. The Regional Center provides services and advocates for people with developmental disabilities. I felt two things, I felt relief, in that we would have a professional evaluation on Isabelle’s condition and develop a plan to help if she in fact had a disability. On the other hand, I was extremely scared. If she was Autistic, this could turn our lives upside down and define a future that we had never ever envisioned.
The night before our evaluation with the Regional Center, I decided to play with Isabelle in the living room. As I constantly tried to engage her, I slowly acknowledged, perhaps she does have Autism. I began tearing up, hoping to God that everything will turn out fine at the evaluation. If she gets diagnosed with Autism, she will be different. How do we deal with that? Our lives will be different.
Diagnosis
I was up and down emotionally from the time Annabelle booked the evaluation at the Regional Center all the way up until we left the house that morning. I took off work the day of the evaluation and the day before. Like any good parent, you want your child to be prepared for a test so they can showcase their abilities. Using my day off, I thought it might be a good idea to do some of the exercises that would be used during the evaluation with Isabelle. As I was setting up, Annabelle asked me, “Why are you practicing with Isabelle?” I tell her, “I want her to do well.” Annabelle goes on to explain that Isabelle needed to go into the evaluation as she is so she can be diagnosed properly and that we can get the appropriate service for her condition. “If she is Autistic, we will need all the services available,” she says. I think deep down I knew that. I was afraid of what the eventual diagnosis would be.
Isabelle’s evaluation was on a Tuesday morning. My mom came over to watch Conor while we went to the evaluation. My mother, being a religious woman, told me she prayed for Isabelle the night before. I thanked her. We told Conor to give his “big sister” a hug (Isabelle was born five minutes earlier) before we left. He did and ran back to his toys. We got in the car and we both took a deep breath, “Here we go.” Annabelles sighs.
The drive to the Regional Center was mostly quiet aside from the various sounds and noises that Isabelle was making from the car seat. We arrive at the Regional Center a half-hour early. As soon I park, Annabelle warns me to not ‘up-play’ Isabelle’s abilities and reminds me that we will need all the services we can get if she is Autistic. We enter the offices and there are two other families waiting for their appointment. For some reason, I looked at the father’s faces. I wanted to see how they were handling the moment. They sat stoic and appeared to give off a strong and confident demeanor. As we walked to the window to check-in for our appointment, one dad looked at me, he gave me a nod. I returned the nod, but it was clear in that moment, he acknowledged the worry I was feeling. It felt good for a quick moment to have that bond.
Our evaluator called us in about ten minutes later. I picked up Isabelle, Annabelle clutched my hand and she began to tear as we walked towards the evaluation room. I tried my hardest to stay composed but I was clearly fighting tears.
Our evaluator was warm, kind, and empathetic. She gave Annabelle and I a hug and said to us, “I can feel that you dearly love Isabelle. Today, regardless of what comes at the end of this, I am comforted to know that Isabelle is in good hands and she will have a good life.” Annabelle and I lost it. We both broke down in the room and just cried. She could see the weight on our shoulders and just knew what to say. No doubt in her capacity as an evaluator, she has delivered similar greetings to other families daily. Our evaluator was quiet for a few minutes as she let us cry. She put her hand on our shoulders and asked, “Are you ready to get started?” We nod as we wipe our tears away. She goes on to explain the various exercises and activities that are used to help determine an Autism diagnosis.
She starts with Isabelle just by talking to her and trying to make eye contact. She was trying to get Isabelle to engage with her. But just like with any other person, Isabelle was in her own world and did not acknowledge her evaluator. She kept trying different ways to engage Isabelle but nothing worked. Isabelle would just move onto something else or played with another toy. It was hard to watch Isabelle not participate as our evaluator attempted to conduct the exercises and activities. With each attempt, the diagnosis of Autism became more of a reality for Annabelle and I. I really wanted to help Isabelle through the exercises but I knew I shouldn’t interfere. It’s a strange dichotomy; it would be best that Isabelle not do well in the evaluation so she can get all the necessary services. Isabelle’s performance, or lack thereof, sealed the diagnosis for our evaluator. She looked at us and held our hands. She gave a friendly smile. “Isabelle has a superpower, her superpower is Autism. Our job and your job is to help her develop that superpower so she can reach her full potential” Annabelle and I smiled back as we teared up, feeling both relief and worry. Our evaluator set up another appointment to go over all the services Isabelle needs and to review all the providers that can help with that. As she was talking to us, I picked up Isabelle. She looked at me and smushed my cheeks together with her little hands. I laughed and asked Isabelle why she did that. She let out a laugh and wiggled her way out of my clench to go play with more toys. Our evaluator saw the interaction and told me, “You have a strong bond Isabelle, don’t you?” “Yes, I think so,” I say. She says, “Yah, I’m not worried about Isabelle, you won’t let her fail.”
