The room was dark, but despite this you could see tears rolling down many cheeks as we were watching the video of three families with severely autistic children.
The parents tell of how they have trouble managing their child’s behaviors; how he can be aggressive and sometimes bites his mother or sister so hard that a piece of flesh comes off. How he has to be locked in the one-room house and screams all day and tries to reach through the tiny opening to get to the leaves off the tree, which he eats. When it is dark his mother comes home after carrying her daily ton of water ( literally), exhausted from the days work, with just enough money to buy one meal for the family. Half-starved she kills herself to provide. Another family has autistic twins. Both parents have good jobs, but they too cannot care for their children and work to make a living.
It is a miracle that the school is open and functioning. The building is a well-cared-for home with a series of classrooms around the periphery of the lot. There are rooms for art, for reading, for daily routine training, for sensory perception training, for music, for speech therapy. The rooms are clean and painted, there are supplies and equipment, the students have been screened and education of the parents and the staff started. There are plans for a playground and a chicken coop for the students to learn to care for animals and thus learn routines themselves. Two months ago it looked like it would fail.
There are speeches, and finger foods (all foods are finger foods in Ethiopia), and soft drinks. Enthusiastic board members and teachers guide the visitors. There are Portuguese and Italian NGO’s who helped put on the opening. There is Gebre Gziabher, a lank tall man in a silk business suit who is an Olympic Marathon and 10K medalist, there are Katherine Simpkins PhD, a government Special Education consultant, Dr. Don Pearson and his wife Barbara and many others I did not know.
I feel fortunate to be able to attend—until asked to give a speech. "Without you this would never have happened," Dr. Ferdu says, and he asks me to tell our story. It was a great pleasure for me to congratulate the Nehemiah School’s founders, Rahel and Solomon and Ferdu and Meseret with their achievement.
I had come to Ethiopia to work with the surgeons at the Korean Hospital, now nearly three years ago. One day Ferdu and I were seeing patients together and then, during a break he told me he had an autistic son. "Wow, that is coincidence," I said, "I have an autistic daughter!" So there we are, from different cultures and different continents, comparing notes on our lives. How difficult and how wonderful it is to have such a special child. How it gives meaning to the saying that God will provide you with the strength to carry your burden. It was the beginning of a deep friendship and when last fall the topic came up of building a school for autistic children that would be open to all, regardless of ability to pay, I promised help immediately.
Through our Reach Another Foundation we were able to send Lindsay Ryder Perez, our special education teacher, at just the right moment and help get the school organized, help screen the children, and set up programs and teaching methods. We had help from many others with ideas, advice and supplies. So, suddenly, there is this Grand Opening, and I am giving this speech.
I know what it feels like to be such a parent. KK, our daughter, demands constant attention, she too would bite herself and sometimes others. She would snatch glasses off unsuspecting passers by, or throw her teddy bear in the river and be unconsolable till I had retrieved it with an icy swim. We put an alarm on the doors to keep her from going for a walk in a midwinter night, barefoot. Finally we took turns sleeping in the hallway by her room to protect her at night and keep her from putting the dog in the drying machine. Then she moved to a group home, and some time later caught pneumonia. She was very sick and on a breathing machine for 6 weeks. Then we had a call from the doctors. Here comes the talk about taking her off the ventilator, I told my wife. The doctors were very kind. They said we had been good parents, and that it must be very hard to see KK so sick. They had tried everything possible to treat KK and had run out of options. Now would be a good time to make the decision to stop treatment and turn off the ventilator.
I understood how they think, and they were right. Maybe that was the right thing. We were all tired, maybe this was the end of the road, that this race was not winnable.
Then they asked my wife what she thought. She hesitated for a moment and spoke words so wise that they bring tears to my eyes every time I tell this story.
She said: "I know that by everyday standards KK does not have a very good life, but within her own world she is happy and full of joy, and I don’t think that I can take that away from her."
Those simple, profound words changed my life. KK survived and her face lights up every time we see her and we are grateful for having her in our life.
Those simple words had a profound impact on me. Especially when resources are scarce—and believe me that topic comes up in the United States, too—people make value judgements about others, and those who are Other do not seem as worthy. So we put them at the bottom of the list and let them fend for themselves or die.
Today we celebrate the opening of this school. We have taken a big step to make the lives of these autistic children and the lives of their parents and siblings more full of joy.
Dick Koning, Rahel, and Dr. Ferku
I am grateful that I have been of some help. I am grateful for people like Rahel and Meseret and Lindsay and Linda and all of you who will support the school in the future.
As I write this, the mullah sings his midday call to prayer. It sounds like a loud cry, a primal scream, a cry for help. Is it just me who hears?
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