| We have listened to dozens of parents tell us in | | | | But that realization doesn't occur without having |
| detail their heartbreaking stories of how they first | | | | been through a life altering experience because of |
| became aware of their child's diagnosis. Whether it | | | | who he is. |
| was Down syndrome, Autism, or brain damage | | | | The other piece of life is the wonderful things that |
| caused by oxygen deprivation during birth the | | | | Nicholas brings to us. He has taught us to love |
| sadness was there, though the reactions were | | | | people unconditionally just as they are. He has |
| varied. | | | | helped Sharon find her passion and calling in life as |
| We can't remember exactly what happened or | | | | a special education teacher. We have learned to |
| how we felt when we heard of Nicholas' diagnosis | | | | speak out on behalf of all children and their needs. |
| of autism. It wasn't because the shock was so | | | | We have learned never ending patience. We have |
| great that we blanked it out. It wasn't because | | | | learned to appreciate everyday and to look for |
| we didn't know what autism was. It was more a | | | | the miracles in each day. |
| reaction of "are you sure and what do we do | | | | After watching our son for 17 years, Kevin's |
| now?" | | | | primary conclusion is that people, not just special |
| Our son's symptoms started gradually. His | | | | needs children, are more than just their physical |
| development was slower than our older | | | | or mental attributes. There is a deeper, spiritual |
| daughter's development and he was emotionally | | | | way to connect with others that transcends the |
| and physically connected to us. Initially it seemed | | | | obvious physical and mental differences we see in |
| that he was developmentally "delayed" due to a | | | | a developmentally disabled person. We recognize |
| language delay. By the time he had the diagnosis | | | | the disability now and love it because we know |
| at age 2 of PDD (Pervasive Developmental | | | | there is a whole person behind the sometimes |
| Disorder), it didn't mean much because there was | | | | puzzling behaviors. The vocalizing and confusing |
| little we could do. He was still our kid, the doctors | | | | habits all have meaning. Now that my boy is 17, |
| didn't know if he would ever catch up and they | | | | we have been fortunate and blessed to have |
| didn't know how far he would go. All of a sudden | | | | known his school friends for the past 14 years. |
| life takes a turn and the journey begins with an | | | | We now see these guys as young men and we |
| onslaught of testing and an onslaught of | | | | relate to them for who they are. These amazing |
| professionals giving opinions, recommendations or | | | | young men seem to step up to the chance to |
| nothing at all. It was still a day by day, pay as you | | | | realize their aspirations and they expect to be |
| play, making little baby steps in the world. | | | | treated as "typical boys". |
| So, we got a boy with a broken brain, now what? | | | | Reaching out for help and support is crucial. |
| The loss of the idealized child is like a grieving | | | | Especially in these times where autism seems to |
| process. It takes a long time, it never ends, it is | | | | be an epidemic, parents and families really have to |
| constantly changing and it is a journey. It is hard | | | | be there for each other. Services for special |
| to accept the fact that we can't do all of the | | | | needs children are available, but not as much as |
| things a "normal" family experience would bring. A | | | | we would like for families in all areas. |
| trip to Disneyland would mean that we would | | | | Here is where a great opportunity for personal |
| have to leave him home. Until recently, doing | | | | growth often occurs. Giving is not just better |
| errands with him has been out of the question. | | | | than receiving. At a deeper level, giving IS |
| Even on the hottest of days, our doors have to | | | | receiving. Getting out there to find out how to |
| be closed and locked in the event he may wander | | | | help your child almost requires one to pay it |
| out the door. | | | | forward to the next parent in line. As soon as a |
| Days without the support of his current | | | | special needs parent catches his or her breath and |
| programs, typically holidays with school breaks, | | | | feels a hint of acceptance of his child's condition, |
| can be awful. Denied our usual daily schedule, | | | | volunteering to assist other special needs families |
| there still is no downtime. We have to be up and | | | | is an exceptionally healing activity and builds |
| out going somewhere, with really no place to go, | | | | stronger communities. |
| otherwise he becomes agitated and restless being | | | | Having a child with special needs transforms |
| around home too much. Sharon finds it easier to | | | | raising a child into an unanticipated and |
| work during those times rather than to stay | | | | unpredictable journey. From hearing the diagnosis |
| home. | | | | to embracing the disability, a life altering |
| The most difficult factor for us is the sadness we | | | | experience occurs. Finding the proper resources, |
| feel for not giving our daughter a normal sibling | | | | honoring your emotions and creating a strong |
| (even though she adores him). A parent has to | | | | support network can help your life become a |
| work hard to heal the shock of an early childhood | | | | meaningful and compassionate experience. We |
| diagnosis and a parent has to have the strength | | | | hope to share that experience with you. |
| to deal with later unexpected challenges. | | | | Kevin and Sharon O'Neil are the founders of The |
| Sometimes Kevin feels like Astronaut Jim Lovell | | | | O'Neil Advocacy Group, a professional consultancy |
| on Apollo 13. "We have to stay calm and play the | | | | dedicated to guiding special needs families through |
| cards we're dealt during a crisis just to stay alive | | | | the labyrinth of issues they face each day. The |
| and to get home safely." | | | | can be contacted at Or 510-863-3119 for more |
| We love and accept Nicholas for who he is and | | | | information. |
| what he will become. In our eyes he is perfect. | | | | |