The Reason

Now we get to the heart of the matter – the reason the Knowledge for People team came to Nepal. We have taken some time to get over our jetlag, do some sightseeing, and acclimate a little. Now it’s time to work. And I have come to realize that, apart from raising my children, it is the most fulfilling work of my life.

AutismCare Nepal is a small, new, parent-founded center in Kathmandu. It is also entirely parent-funded. Most of the parents had to go to Delhi, India, to receive a diagnosis for their children and therapy/treatment suggestions. Imagine having to go to a different country for a diagnosis. They had absolutely no resources for autism families in Nepal. AutismCare Nepal is the first step to rectifying that.

Zahida, Tanya, Ann-Marie, Nikki, Dori

And that sort of makes the Knowledge for People team the second step. Our team is comprised of Nikki (the director), Dori (speech therapist), Ann-Marie (ABA teacher), Zahida (behaviorist), Blaine (photo/videographer), and me (parent representative). We have prepared presentations on general autism information, parenting experience, ABA therapy, PECS, social stories, and sensory integration therapy. Our idea was to have two days at the beginning of the week to give the presentations, as a way to introduce the background knowledge about the therapies and strategies. Then we would spend the rest of the week working directly with the children (twelve of them, we were told) and their parents on an individual basis. Upon our arrival, we discover that things have been rearranged. The presentations are now scheduled for the end of the week, and individual sessions will be done first. Not only that, but due to a news article about our arrival that had been published the week prior, the number of children jumped from twelve to thirty. We never thought there would be so many. But then again, this is autism. The rapid increase in Kathmandu mirrors the increase in developed countries. I immediately saw the parallel.

So, we figured out a way to fit in 28 individual sessions with the families. We wish we could work with them all individually, but this was the best we could do. The two families we couldn’t fit in (and there were even more as the week went on!) agreed to attend the presentations at the end of the week and ask questions about their individual needs then. We set up stations in different rooms of the center, which is a two-story house that the parents rent (in addition to their regular living expenses). One room is for PECS and social story instruction, another room is for ABA/DIR Floortime instruction, and the third is for sensory integration. The parents and children rotate through each of the rooms, spending close to an hour in each one. Some of them have walked a great distance to be here. Some of them have taken various buses for over an hour. Some speak a little English, some none at all. By the time all of those scheduled for that day have gone through all of the rooms, the poor kids are past their limits. It is exhausting for everyone.  As an introvert, it is difficult for me to give a condensed version of my half-hour-long sensory integration presentation to each new parent. I have to do this otherwise they will not understand the reasoning for the sensory therapy techniques that Zahida (who is studying to be an OT) and I are suggesting for their children. I have to describe, among many other things, the vestibular and proprioceptive senses 28 separate times (29 if you count the presentation at the end of the week). I wish we could have done the presentations at the beginning of the week, so that everyone would have this information prior to the individual sessions, but I have to be flexible and focus on doing it differently than I expected. And here I see another parallel – learning to be flexible when plans change is something that my own son struggles with on a regular basis. Now I have some idea of just how exhausting it is for him.

Aside from adjusting to the change in plans and the increase in children, overall our individual sessions go very well. The children range in age from three to eleven, at different areas of the spectrum. Several of them are nonverbal, and some have limited verbal ability. Some are fearful, some are not. Some are quiet and complacent, others are loud and aggressive. Some throw sensory seeds all over the room, a few lie down and nap. Some put everything in their mouths, some categorize and line things up. But all of them, well, they are simply beautiful. I see so much of my son in many of them that it throws me back to the early days of his autism diagnosis, when we didn’t have the internet for information and support, and all the books I could find were archaic or otherwise not helpful. This is where those parents are. And they are wonderful – so dedicated to their children and eager to learn. My experience of having my son’s diagnosis twelve years ago helps me to have some idea of what they’re going through now. I look into these parents’ tired but yearning eyes and want to throw my arms around them.

And of course they have questions. Tons of questions. Questions about spitting, toilet training, masturbation, safety, eye contact, head-banging, you name it. They are sponges, for lack of a better metaphor, absorbing every suggestion, every piece of information I can give. But no one has all the answers, especially not me. And near the end of one of my individual sessions, when a five-year-old girl begins having a seizure, I freeze. Her mother is sitting cross-legged on the floor with her daughter lying in her lap. She does not speak English and the translator was needed elsewhere, so I have no way to communicate. But the mother, of course, knows what to do. She calmly holds her daughter as she seizes; I watch her little body twitch violently, and she moans with each spasm. I wonder if she is in pain, or afraid, but maybe her sounds are involuntary. I don’t know. I feel useless. I have no experience with seizures, and this one seems to be lasting a minute, but feels longer. Trying not to panic, I ask if she needs anything. The mother glances at me. I know she does not understand my words, but I think she senses the concern in my voice, and there is some sort of appreciation in her eyes.  Then she turns her attention back to her daughter, who soon stops convulsing. A moment later, the mother picks up her things and, with her daughter in her arms, says Namaste and leaves.

I take a break. I blot my face, drink some water, and go in the next room to observe the end of a PECS session. I know if I go somewhere alone, my emotions will overcome me, and now is not a good time for that. It is mentally and emotionally taxing, this work we are doing, but as I mentioned above, it is the most fulfilling of my life. I know that my suggestions cannot help everyone, like the parents whose children have seizures, but I also know that my presence here is making a difference. They know that people out there care. That we would come from half way across the world to try to help, to tell them they are not alone. Yes, that is the reason.

For photos of us “in action” working with the kids and parents, click here.

13 thoughts on “The Reason

  1. Meg

    This overwhelms me. I’m not sure why, I think what you have done is amazing and I know I would love to be the same sort of ambassador when my little family grows a bit. But, as you write about taking that moment to regroup and knowing that you shouldn’t go off by yourself, I feel swamped with emotion.

    Maybe it’s the memories of having all those questions. Maybe it’s the recognition that Autism itself is a new language, adding an actual language barrier on top of that is terrifying. Maybe I’m just emotional today and wish I could gather all those families up and hug them to let them know they are huggable!

    Thank you for sharing your experiences, they obviously affect us all!

  2. Holly

    Wow and of course you are making an incredible difference… It must have been so incredible to see all the people come to you, looking for help, and at the same time, wishing you could stay forever and help them all. I give you all so much credit for what you do…

    I have a friend whose autistic daughter is prone to seizures–quite frequently too, it’s scary to watch and makes you want to hug the child and cry.

  3. dynamite girl

    Tanya, I got goose bumps as I read this. I remember those early days of an Autism diagnosis, no internet, no support, no one I knew even knew of a child with Autism, boy things change. I see everywhere I look now. As my sister often says my life is colored with Autism. What you did in Nepal is amazing. Every time I read of your trip I am in awe of how as a group you were able to pull this together, to help families who so desperately need it. I am not sure what is more beautiful the glowing smiles in your picture, or knowing what you did.
    P.S. The first time you see a sezuire it is bt far the most scary, after that you are well on your way of handling it with out losing your wits.

  4. rhemashope

    I’m speechless. This post has left me with so many emotions that I cannot begin to articulate. Thank you for doing this, Tanya, and thank you for sharing it with us.
    My favorite line: ‘But all of them, well, they are simply beautiful.’

  5. mama edge

    Thanks for reminding me how lucky I am, with my sons’ services all in town and accessible via my air-conditioned car. And thank you for being part of something so wonderful that makes life easier for people who have it so hard most of the time.

  6. Cheryl

    Wow – what an inspiration you are… YOU are simply beautiful, Tanya! Keep on doing what you do, because you do it oh so well!

  7. Joanie @ The Bright Side

    Oh, Tanya. What an amazing thing you are doing! The way you write about your experiences moves me to tears, again. You have a way of capturing so many of those strong feelings of “the early days”. So beautiful and gut-wrenching at the same time. I am so happy for those parents that you all are there! Thanks again for sharing. Take care.

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  9. Alicia

    You Are AMAZING. This is incredible. I am in complete awe. Congratulations on a successful trip. you should write a book about The Knowledge for People team and your experience! 🙂

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