The shock of the diagnosis was so great that I needed several warm blankets to calm my shivering body. Still waking up from the anesthesia and exhausted from hours of unproductive labor prior to the surgery, I wanted to know about the baby. My husband had begged to tell me the news himself, yet the neonatologist insisted on following protocol. She said the baby had turned blue after delivery and was quickly whisked away to the NICU. In the organized chaos of the recovery room, our world collapsed, crushed to pieces, with the soft cry of a newborn child. Down syndrome.

The neonatologist was all business. She straightaway told us that our son would not be like other, normal children and rattled a long list of things this child would never do and mentioned nothing about what he could do. NICU staff bombarded us with a ton of social services paperwork, and then told us our options-we could put the baby up for adoption or place him in an institution. This was our son and we couldn't give him up. Instead, we named him Rohan, which in Sanskrit means, "ascending, healing, and rising to higher levels or degrees." We desperately wanted our precious child to rise above his diagnosis, and we were willing to do everything possible to help him.

At first, I was not ready to do much but tend to the baby and cry. I cried a lot and mourned for the loss of the child we didn't have. While it took me a while to become strong and accept our new reality, my husband was busy researching therapies and talking with other parents of children with Down syndrome. Since we received no encouragement from the medical professionals, my husband began looking for true support networks almost immediately.

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Cicero

Years ago I hung a quote by the Roman orator Cicero on Marcus's bulletin board that said, "The greater the difficulty...the greater the glory." This quote describes our journey with Marcus quite well. When we first started the NACD program, he hardly had any speech at all. He was extremely sensitive to sounds and textures, didn't make eye contact with anyone, and wanted everything to be a certain way or he would throw a major tantrum. Little by little, with the assistance of NACD and other support people who came onboard with us, we were able to help Marcus move out of his little world of autism into ours, the real world. By the end of fifth grade he was attending regular education classes without an aide and had come a long way-from a three-year-old who would freak over a fork in the wrong place, to a child functioning comfortably in a typical environment-yet, clearly capable of so much more.

It would be an understatement to say that the last ten years have been busy. While we climbed the most challenging mountains in the first eleven years of his life, the last decade has also been difficult but incredibly gratifying as well. The growth we've seen in Marcus has not happened easily; but implementing the NACD program consistently with discipline and love, along with the help of his speech therapist, his long-time tutor, as well as many others in and outside the school setting during this time, have given us boundless rewards.

After Marcus completed intermediate school, he attended regular classes at the local middle school, then high school. NACD affirmed the importance that it was my responsibility to be the facilitator of my son's education, and so I worked tirelessly, perhaps even harder than had I actually homeschooled Marcus. At the beginning of each school year, I would first meet with a counselor to help me select teachers who would be willing to work with me and work well with Marcus. Then I would meet with the teachers and present them with a folder of information about Marcus. I would give them everything they needed to know about him-from his little quirks to how he thought. My goal was to facilitate their understanding of who Marcus really was, what his difficulties and strengths were, and also to let them know that as my child's primary advocate and as a teacher myself, I knew the challenges they faced and that I wanted to partner with them to help them teach my son. I always stressed that our relationship was a partnership and each of us-teacher, parent, and child-had a responsibility in this partnership. Meanwhile, we continued working on the NACD program at home. It was wonderful to have our evaluator track Marcus's progress and tweak his program as needed. She was one of our greatest cheerleaders. NACD was the perfect place to gain hope and skills to address Marcus's specific needs. 

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Existing in survival mode-day... after... day... after... day-is downright exhausting.

This was my reality.

My son screamed incessantly, hid under the kitchen table, refusing to come out for an inordinate amount of time; played for hours with spinning wheels, or stared dreamily as "Dora the Explorer" and "Thomas the Tank Engine" flickered on the television screen yet again and again. But it was the unpredictable, heart-wrenching shrieking over the gentlest touch that tested my sanity the most. My adorable little boy's body was present; Darren was not.

The services from our state's early intervention program seemed to make no difference. The speech therapist built towers with blocks, talked to him, and did all the things we were already trying, yet could not get Darren to interact with her. Seeing no progress at all, no sparkle of hope, when Darren was 2 ½, I decided to try NACD.

Honestly, for a long time I didn't implement some NACD suggestions-I didn't have the heart to take Darren's trains away, for example. (That was the only thing that kept him quiet, plus I couldn't see how removing them would make any difference.) I argued with Lyn, the NACD evaluator, and I fought with myself, not knowing what I should do. Finally, when Darren was about four, I agreed to an experiment and committed to at least three months of implementing the NACD program with exactness, including removing the stims.

The detox period was pure hell that I wish for no one. After I took away anything that he could possibly use to stim, Darren lay on the floor screaming. If he wasn't vociferously howling, he was just plain miserable. Lyn had been right-allowing Darren to stim was like handing him a bag of cocaine; he was addicted to the wheels, and the more he stimmed, the more he needed the "fix." This sensory play, this DSA (Debilitating Sensory Addiction) was giving him a momentary sense of pleasure, yet was seriously hindering his development.