My name is Pam Neuman and I am the parent of a child with special needs. Up until 5 years ago, my experience with people with disabilities had been extremely limited. I was unaware of the early intervention services available for children with special needs, as I had never needed those services before. I was a third-grade teacher in a private school and most of the children I taught were "typical" 8-year olds. On January 3, 1998, my whole world changed in an instant. That was the day I gave birth to my first child-Jasmine.

After a healthy and normal pregnancy, my daughter was born blue. In fact, if it were not for the intuition of a very special nurse, she would not have survived the birth. Miraculously, she was resuscitated and before we were even able to hold her, she was taken away from us. At first my husband and I thought it was something minor and she would be brought back to us within minutes, but that wasn't the case. As minutes turned into hours, we knew that something was terribly wrong. By midnight on the first night, our baby had gone through the 1st of her 15 surgeries to date and we were told that she would have to undergo open-heart surgery within a week. We named our baby "Jazz" that night, knowing that she would need a "Jazzy spirit" to keep her alive.

The first 3 days of her life were the worst 3 days of my life. There were hundreds of tests, specialists, and questions. Information kept coming at us nonstop. Each day the doctors found something else wrong with her. By the end of the third day, we had a label for her condition-CHARGE Association. After receiving this diagnoses and doing a small amount of research about the condition, I knew my life, from this point on, would never be "typical."

We spent 3 months in the intensive care unit at the hospital. Jazz defied all the odds and survived all her surgeries. She was truly a miracle baby and clearly had a burning desire to live. I promised myself then and there that I would help her live her life to the fullest extent, but I had no idea how to achieve this difficult feat on my own. When it was time to leave the hospital, we could have passed our medical board examinations. Unfortunately, we were still new parents and had no idea how to care for a child on our own, particularly one that was so medically fragile. In the hospital, there was a primary physician and nurse assigned to our case who answered all of our questions and coordinated all of Jazz's care. Who would take on this role when we were out of the hospital at home with our child?

Before we left the hospital, we were visited by a social worker who was part of a team of therapists of an early intervention support program. We were assigned a team of specialists that included an occupational therapist, physiotherapist, speech therapist, and social worker. Each person came to our house every few weeks to either provide therapy for our daughter or information for other services that we needed for her care. The social worker made us aware of services that were available to us through both government and private sector agencies to help us with nursing respite, in order to give us a break from the intense and exhausting level of care our child demanded, as well as information about funding for her expensive day-to-day medical equipment.

In the past 5 years, our team has provided us with ongoing support and resources. They have advocated for us in a number of situations, gone to medical appointments with us, and always been at the other end of the phone when things have gotten tough. I do not know how we would have survived the past 5 years without the coordinated efforts of this organization.

Now that Jasmine is 5 years old, her medical needs are not as overwhelming. Our early intervention team is presently focused on her physical and cognitive progress. They are also helping us prepare for the next phase of her life[horizontal ellipsis]school. Up until this point, Jazz has attended an integrated preschool and our team has worked with her both at school and at home. We have made a decision to hold her back another year at this preschool, as we do not feel she is ready for Kindergarten. Unfortunately, early intervention programs in Vancouver, British Columbia, focus on children aged 0 to 5 years old. After a child is 5 years of age, they are no longer eligible for this type of organized program and parents are left to fend for themselves. Early intervention takes into account the very early formative years of a child's life, which is extremely important, but what about the children who are not diagnosed until 4 years of age? What about the families who do not know that these services are available to them until their children are older? What happens to these families? I feel strongly that these services should be available for families for as long as they need them. As each family and child's situation is unique, I feel that organizations need to assess each individual child and determine the level of care that they need, as opposed to having a predetermined age for every child's services to be cut off as they transition to Kindergarten or turn 5 years old.

We are about to enter the "public" system where budget cuts are rampant, children with special needs are not getting the services they need, and teachers are overwhelmed with the lack of support they have to effectively integrate all children within the classroom. Our proverbial safety net is about to be pulled out from under us and we, like other parents of children with special needs, will have to find a way to navigate through the system to find the services that are available and necessary for our child's future success. This is a scary concept for us. It is a shame that our society does not value the importance for all children to reach their potential, nor recognize the stress that families of children with special needs have to cope with on a day-to-day basis. The benefits of a good early intervention program cannot be emphasized enough for the society as a whole. In an ideal world, these services would be provided to our children for as long as they are needed. Until this happens, we will continue to take one day at a time and be the best advocates we can for our children.