Autism and the Language of Love

Last month, my son, E. had a two-week vacation in China with us. Before we enrolled him in a school for special needs in the Philippines, he spent most of the first 5 years of his young life in China and probably considers it his real home. This vacation was going to be different from last year’s because this time he would see his nainai (paternal grandmother) again after two years.

My husband had thought E. would not recognize her anymore, yet when I told E. that his nainai had arrived, he rushed to the door and had the sweetest smile on his face when he saw her. He reached out his little arms to her, and when she didn’t pick him up, he held her hand and led her to sit on the couch and kissed her. He kissed her cheeks several times.

There were no words between them, as what little Shandong dialect he picked up from her a few years ago had all been forgotten, and the less than 5 English words she picked up from him had all been forgotten as well. But this did not stop them from communicating in their own unique way. They came up with a clapping game that kept him entertained for the next 6 days.

When the time came to say goodbye, E. did not realize he would not see his nainai the next day or the day after that. As he likes airports, he was just happy to run around in the airport and get on the plane. But hours later, when he got out of the car and realized he was back in his other home (in another country) without his father and his nainai, he became very quiet and in the late afternoon he said to me, crying, “Let’s go.”

So we went out with my sisters and my nephew (who have been his companions for the last two years.) I was hoping he just wanted to get out of the house for a while, but when he realized we were still going back to the same house, he cried. That’s when it dawned on me that he wanted to go back to China. The second night after we arrived, he was still unhappy and cried again, so I finally asked him, “ Do you want to see daddy?” He didn’t say anything. “Do you want to see nainai?” He wailed and said, “Nainai!”

I right away made a video call to my husband and asked him to give the phone to his mom. When E. heard her voice, he grabbed the phone from me and looked at his grandma and cried and kissed the phone. It was the most touching thing I have ever seen my son do. He didn’t give the phone back to me for a long time. He just wanted to watch them.

On the third day, he probably realized that he could not really be with his nainai, and that a video call is not the same as being with her, that he did not want to look at her anymore. I don’t know if he feels betrayed by his grandma; I hope he doesn’t because she loves him just as much as he misses her.

We have been home in the Philippines for almost two weeks now, and he’s back to his happy self. E. is such a sweet 7-year -old boy that I keep telling him I love him just as often as he tells people, no matter family, friend or stranger, “I love you” right after greeting them “Hi” or “Good morning” or “Goodbye.”

I dread the day, less than a couple of weeks from now, when I have to say goodbye to him again. But I know he has his way of coping — we’ve been through this before and it’s usually I who take a week to recover.

For an autistic 7-year old who is minimally verbal, E. knows how to communicate his love for the people who love him and has an amazing strength to bear the pain of missing them. I am learning so much from my son.

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To a Wonderful Father 

You dreamt dreams
Bigger than mine were
Before he was born.
They grew even bigger
Weeks and months
After he was born.
Then we were told
Something was wrong.
It would take a while
For him to start talking.
Our friends told us
He may never go to college.
And we were crushed.
You, with the bigger dreams,
Devastated.
But you bounced back.
You fought
And continue to fight
For this little boy
We brought to this world.
You changed
From a dreamer
To a realist.

No more dreaming.
Just doing everything that is best

For your son.

Happy Father’s Day to all wonderful fathers! 

On “Engaging Autism”

on autism1

          As it is Autism Awareness Month, I feel I should do my share in promoting awareness of this condition which affected my son. Even though I suspected ASD as soon as he turned two years old, it wasn’t until E. was 2 years and 6 months that he was diagnosed with ASD. And even though, I was quite sure he was autistic even before the diagnosis, it was still devastating when I read the diagnosis. It was like a death sentence. But that was so 2013. We have since accepted, embraced his autism and just keep looking for ways to help him.
          These days I’ve been reading Engaging Autism by Stanley I. Greenspan and Serena Wieder. We’ve had this book for almost 4 years now. It’s one of several English and Chinese books my husband bought after our son was diagnosed, but at that time I really could not focus on reading about autism. Now I wish I read the whole book 4 years ago. I would have been a better mom.
          Today I want to share with those who are interested in reading about autism some of the things I learned from the book.

1. If they are under stress, autistic children can resort to scripting which they use in a “self-stimulatory way, to pull away and organize themselves.” Instead of telling off a child for scripting, the caregiver can try to understand that perhaps the child is under stress, what caused the stress and help the child to de-stress.

2. Do not yell at a child who is exhibiting undesirable behavior. Autism is a neurological disorder, and autistic children’s nervous systems work differently. An autistic child may crave certain sensations or have sensory problems. My son went through a phase of chewing on whatever he could get his hands on – books, pencils, plastic spoons, my iPhone (!) He also went through a phase of playing with spit, and he spat on everything he happened to like – his favorite books, his favorite spot on the couch, his favorite corner in the bedroom, the sliding doors, etc. There were times when I was so tired and sleepy, but he wasn’t and just kept “blessing” everything with his spit that I lost it and yelled at him. That didn’t stop him, of course. He just kept doing it. Thankfully he finally got over it.

3. When an autistic child is having a meltdown, do not think he is just being naughty or being manipulative and scold him because most likely he can’t hear you and therefore can’t understand you. A meltdown actually shows “real helplessness. The child is feeling so disorganized that all [he or] she can do is kick, scream, or sob. The fact is, young children don’t have a lot of control over life. And they aren’t always able to understand why they can’t do what they want to do, or have to do things they don’t want to do.” I have witnessed this several times in the past with my son. Fortunately, I had learned this early on and did not scold him during or after a meltdown. I would just look away, make soothing sounds sometimes and say, “It’s OK.” I’ve seen other children having a meltdown and the parent yelling at the child to be quiet which only led to the child screaming louder.

4. “…Overstimulation of the child by too much activity and various physical and emotional changes” can contribute to meltdowns or regressions. When my son is left to watch his favorite videos on YouTube during the day, he will most likely be up all night scripting and stimming. Although I’m grateful for these videos which have helped him with his language, excessive exposure to electronic devices such as the iPad and smartphones which he learned to use at such an early age, is detrimental to his development.

5. Meltdowns and regressions can also be brought about by changes in diet and nutrition. (Conversely, a change in diet and nutrition can improve a child’s behavior.) The book only mentions that if a child “gets more sugar or more chemicals in his food as usual” he may “get more reactive to emotional stresses that he could ordinarily handle.”
          But having read about the Gluten-Free/Casein-Free diet, I honestly believe that what certain autistic children ingest can have a strong influence on their behavior because I have seen this very clearly in my son. I have often talked about this with parents and caregivers of autistic children that I have met. Most of them are sadly skeptical and most likely have not given it a try. In Asia where MSG is a staple, it is very difficult for a lot of households to even think of cooking without it. But my son’s behavior has certainly improved with an MSG-less, additive-less diet. He used to be hyperactive and laughed for no obvious reason, but he has since changed. Now he has a restricted diet of rice, meat, fish, vegetables and fruits. I only let him drink water and homemade juice (with honey to sweeten it).

Every autistic child is unique, but some have the same speech or behavioral problems. I hope this humble sharing can be of use to the reader. 

Have a lovely week!

T.