I see children as kites. You spend a lifetime trying to get them off the ground. You run with them until you’re both breathless…they crash… you add a longer tail… they hit the rooftop… you pluck them out of the spout… you patch and comfort, adjust and teach. You watch them lifted by the wind and assure them that someday they’ll fly.
Finally, they are airborne, but they need more string and you keep letting it out and with each twist of the ball of twine, there is a sadness that goes with the joy because the kite becomes more distant and somehow you know that it won’t be long before that beautiful creature will snap the lifeline that bound you together and soar as it was meant to soar… free and alone.
Only then do you know that you did your job.
—–Erma Bombeck (February 21, 1927 – April 22, 1996)
During the winter break we traveled to the Philippines and welcomed the New Year in Cebu City. From that point on our holiday turned serious when I managed to book appointments at a developmental center, nicely named Kite Strings, to have J assessed. I am not satisfied with the single visits he’s had in Washington state with the different specialists there, obviously an hour of observing him and interviewing us is not going to be enough.
I was pleased to note that we got more than an hour at Kite Strings. My former boss has an autistic child, now 14 years old, and they previously moved to New Zealand to get professional help for him. Then they came back and after his wife got a degree in special education she opened this center just two years ago. The first thing that impressed me with our first appointment was we were met and interviewed by a team. Each of them, it seemed, had a child who have similar issues like our son. It was reassuring to compare notes. I appreciated it even more when the speech-language pathologist suggested that we bring in the behavior specialist. She noted that J is more capable of language than the few minutes she spent with him, but sensed that we need to determine what would motivate him to engage in conversations. This was more evident to her when we discussed his mainly dry food diet, which is the area of the physical and occupational therapist (PT/OT).
Our appointment with the PT/OT came the next day, and we got off to a late and slow start. I could not hide my irritation at times, because I had to fill out another form and went through the same interview questions. To make matters worse my husband and I had a miscommunication and didn’t have the PT/OT report from the States. She wanted to jump in and focus right away on our concerns. I thought that with her being the expert, she could at least observe or spend some time with J, then tell us how to proceed. This seems to be the theme of the center though, them asking us what our concerns and goals are. Perhaps they are more used to dealing with kids who have already been fully diagnosed and will only then draw up an intervention program accordingly. At any rate the behavior specialist finally showed up, and immediately picked up that J was always “running the show,” — that is, he would only initiate and maintain conversations on his chosen topic, which were dinosaurs. When the PT/OT tried to engage him he would avoid eye contact or turn his back when he lost interest in the activity, or wanted to do something else.
There were a lot of things that were not new to us, and this was one of their observations that I find validating (it’s good that it’s not due to clumsy parenting, but it’s not so good when even a speech-language pathologist would ask me for suggestions on what motivates our son — it’s never the same thing every day).
What was new to us was that how everything seemed to be inter-linked: son only eats dry food, does not eat meat so he does not get to chew, therefore he has poor muscle tone in his jaws, therefore he seeks sensory stimulation by chewing on tassels and towels. He is only partially toilet-trained because he is prone to constipation and pooing hurts so he refuses to sit down, and instead keeps his legs straight together.
I knew they were right about desensitizing him by exposing him to different textures — but I got defensive when I explained there are many things that are expensive or hard to find in Lagos, and I am tired of setting different bowls of food in front of him all day only to have to throw these out untouched. And they are right that we just need to keep trying because we need to improve his nutrition. They suggested probiotics (popular in Southeast Asia as Yakult yoghurt drink), and James love it, but this was the day before our departure.
Even if I was annoyed by the PT/OT’s suggestion to desensitize J to soap and shampoo, I find that after only 3 days he does not object to it anymore. Maybe he’s just used to me giving him a bath, maybe he just likes the strawberry-scented no-tears body and head wash I bought, who knows.
Now that strike in Nigeria has been called off what I plan to do this weekend is check if a similar probiotic drink is available in the groceries in Lagos.
It’s been a week now, and I’m still waiting to hear from them. I am dying to read their report and recommendations, as my online class on Autism is also starting today.
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