Family Notes

Overview of the family: There are three people in the family – a mother, a father, a 2 years old daughter, and cat. The parents are full time employed. The nanny is staying with the child during the day. The family is living in Bronx, NYC.

1. When your child’s disability was initially suspected?

The daughter has been diagnosed with down syndrome by the doctors and therapists after she was born in the hospital. She was in the neonatal intensive care unit (NICU) for two weeks. She had swallowing issues.

2. Please discuss who brought it to the parents’ attention. If it was the parent who first suspected it, what was the cause for this suspicion?

The doctors in the hospitals brought to the parent’s attention about diagnosed and got an evaluation. Then the services that child required by Early Intervention program brought it to the parent’s attention more clearly.

3. Please share your experience with the initial testing process. Also be sure to discuss the child’s experience, as well as how it may have changed during additional testing over time.

Testing process started in the hospital after the child was born. The doctor gave the phone number of the services and then the mother called for opened the program. Two weeks a lot of services came for making evaluations. They all asked the same questions. Sometimes it was too hard for mom to answer for all of these questions because she was not familiar with this process and this diagnose.

4. What was your level of involvement during the IFSP development? Be sure to discuss thoughts on how the process could be changed (if applicable)

The parents were involvement during the IFSP development in each meeting. During the meetings the team of the services changed the strategies and didn’t interesting if the parents agree with them.

5. Please share with me the various forms of therapy, treatment, and support that you and your child have received over time.

The child had physical therapy, feeding specialist, occupational therapy, special education teacher, and social worker services.

6. How would you describe the relationships with the various service providers?  Be sure to include the ability to have your needs understood and met by service providers

Some of service providers was better than others. One explained a lot about child behavioral (why she is doing this and that) and someone just came did their work and left. The child had changed three different speech therapists because of these issues.

7. Discuss both the joys and frustrations that you have experienced with your child.

The child is an early bird. The morning routing is ruff. It takes longer for dressing up and eating. During the day the child is so happy for playing and spend time with therapists. Feeding during the day is still hard. The child still has the feeding problems. Outside in the park the child is so successful. She loves kids.

8. How has the fact that your child has a disability affected others in your immediate family? Be sure to focus on the siblings, spouse, and grandparents.

For the father it is still hard understand the child’s behavioral. For grandparents it is hard too because they are from different culture and time. They try to accept the child as she is, but it is very difficult for them.

9. How has this experience affected the establishment and maintenance of friendships that the child has had over time?

The child is different from other kids on playground. She is playing with them but doesn’t have true friends yet. The kids don’t’ understand her. Sometimes she can started screaming for no reason or jumping or dancing.